My Life Through a Lens

I got everything done early tonight. Nebs, inhalers, vest, pills, and even some nagging household chores... and now I can't get to sleep. So, I think I'll take this temporary insomnia as an opportunity to post some pictures I've been collecting especially for this blog. The following are some snapshots from my life as of late, some are CF related and others aren't. I guess I'm just feeling artsy, expressive and such.

My P.M. pills... on top of my lab orders.

Vest + Nebs = Treatment Time!

This has to be the best picture ever. Makes me laugh every time.

My dog, Max, hilariously lounging.

My current Facebook photo. Cheese!

Starbucks. Taken while chatting over coffee with Kelly.

New Year's Eve with my new cousin Karissa!

Karissa and I again on New Year's Eve. We know how to party!

Identity Crisis

Usually I try to keep my life in neat little compartments, the two biggest sections being my CF life and my "normal" life. This all started when I was diagnosed with CF right smack dab in the middle of middle school, the summer between 7th and 8th grade to be exact. At 13 years old, I was afraid of damaging my mildly popular junior high reputation and scaring off the cute boys so I decided to keep my diagnosis to myself. I didn't tell anyone I had CF, outside of family and close family friends, until my senior year of high school when I told my best friend of eight years. Two months later her and I lost contact completely. Whether that was because of CF or something else entirely I have no idea but it is awful coincidental. We haven't spoken in almost three years. This along with the whole fatal disease stigma has left me pretty gun shy about sharing my CF. Not because I want to appear normal, I'm fully aware that "normal" is just another word for boring, but because I'm afraid people will decide it's too much. Too much to handle, too much to talk about, too much pressure, too much too soon. I've never had someone abandon me because of CF or even appear to be deterred by it (besides my high school BFF) but the fear still sticks with me.

When I got out of high school and away from my high school friends I started noticing I was opening up about my CF more and more to friends, family, and even people I had just met. I think CF became more real to me after high school when I was left to make life decisions about a life I wasn't sure I would always be healthy enough to lead. Scary stuff. I like who I am now in that respect, I don't mind talking about CF, I actually enjoy it sometimes. It is such a major part of me and I spend a lot of time keeping myself alive, I deserve to talk about it sometimes. I wish 20 year old me could tell 13 year old me that.

I bring this all up because lately I've found myself pulling away from my old friends and isolating myself from "normal" me's friends and instead only seeking out interaction with CF me's friends. I find that I want to share everything about my life and not just a part of it. Maybe CF is becoming more and more a part of my life... Either way, I feel that if people don't know about my CF then there is no way they can really know me. I was at work today when my high school prom date sauntered in to have dinner with his dad. I say sauntered because he was stinking adorable and I was a little twitterpated. Mhm. He immediately asked if I was working and when I finally worked up the courage to leave my kitchen safe haven and visit his table I felt like I was looking for who to be around him. Which me was I supposed to be? I've known this guy for a pretty long time, we met in middle school and went to church and on several mission trips together, I'd like to think that we will always be pretty good friends. The fact that I felt like a different person around him really unnerved me. I forgot how much I hated "normal" me, CF me is way cooler. He hadn't changed in the years since we last talked in person, I had.

I've read artices, lots of articles, and I know that as CF patients get older and closer to life-changing sicknesses they take a hold of their care and take a real active interest in their illness. Well tah dah, guilty as charged. I just don't know how to undo the past, how to rewrite who I am to my past friends like I am so desperately craving to do. I've taken baby steps, like joining several CF groups on Facebook and even adding my diagnosis to my Facebook bio. This blog was even a baby step in it's own special way. Maybe these little steps will lead me to somewhere... but there's still the fear and general anxiety. Will they think it's too much? Will it scare them away? What if they think CF is gross or weird? Cause it kinda is.

I would love to share this blog with all of my 238 Facebook friends and bring awareness to both this disease and my constant struggle with it. As of now I've only given the link to five or six friends and family members, people who know about my disease and have stuck by my side always (hey reader, that's YOU!).

So here I am, having a full scale identity crisis at 20. Better now than at 40 I guess. I hope that someday I feel comfortable enough to share this, all of this, with both my old and new friends because I think CF me is pretty awesome and I'm proud of who I am today.

Let's Get Clinical!

Hey there, reader. How are ya? This past week has been a little crazy with a capital "C" but things are calming down now, and for that I am so thankful. Between helping out at my family's restaurant, doing treatments, taking meds and basic hygiene I flop into bed every night completely spent. Anyways, enough whining, let me tell y'all the good news. Drum roll...

My CF clinic visit was last Friday and it went FANTASTIC! My lung function is sitting pretty at 104%, that's right, one hundred and four percent! My appointment lasted for three hours and I don't know if I have ever felt so at ease with my care team. Everything was just great. I am in love with my new doctor! He is everything I am looking for as an adult with CF; organized, articulate, understanding, and determined. My doc did order a new and more advanced sputum culture to check the antibiotic levels and resistances in my lungs. That test will decide where my care plan goes from here and the results should be back in 4-6 weeks, which is when I will be at the CF clinic again. AND I didn't even get in trouble for my weight loss. I was really surprised considering I'd lost another two pounds, but my nutritionist reassures me that my BMI is still perfect so she has no qualms at this point. I couldn't help but feel like I dodged a bullet there!

So that's that. I'm healthy as a horse! Not really, but in CF terms I'm doing pretty great and I feel really good these days. It's nice to feel normal.

An Update For the Sake of Updating

At a family dinner tonight I was informed that I don't update my blog nearly as much as I should. I agree. My excuse? Writing down what is happening in my life sometimes seems like the most stressful thing in the whole wide world. Silly, I know, but sometimes it cripples my little typing fingers. So that's my story. Sorry to my sweet cousin M who checks out my little bliggity blog often; I'll try to write more. Like now...

Tonight I have nothing pressing or exciting to report. The start of this month (a Tobi month) brought a total of four antibiotics to my system. Tobi months are never easy but the addition of a fourth antibiotic really made it tough. As of last night I'm back down to two, a little more manageable. YAY is all I can say.

I do want to mention how thankful I am for my sweet family. Specifically, those who attended a fundraiser last night for a fellow CFer. My Cyster, Tabitha, is dealing with end stage CF and therefore has started raising money for a double lung transplant. I am unable to attend any of her fundraisers since CFers can't be together without creating a bacterial swap meet. It makes me sad that I wasn't there for my friend but the fact that my cousins and uncle were there makes me feel a gazillion times better.

What's on the agenda this week? CF CLINIC of course! Friday, February 17th to be exact. Pretty exciting business if you ask me. I've been feeling really, really great lately. My only concern is my weight. :/ It is very important for CFers to maintain their weight at all times. Let me say that again, it is very important for CFers to maintain their weight at all times. Weight loss not only draws concerned looks and lectures from your doctors, it also indicates disease progression or exacerbations. Neither of which will earn you any brownie points. My usual weight at my doctor's office is 140-143 and my CF doc is very happy with that number. When I went to the office in December I only weighed 136. *Gasp* I got a skeptical look and was told that if I don't gain back those pounds over the holidays we would have to do something. Like I said, I feel great so I can hope that the all-knowing scale reflects that.

I wish all of my sweet, supportive friends and family a fantastic week and a Happy Valentine's day!

X-Ray Vision

Whenever I go to get x-rays I always walk out thinking I know how to read them. False. So so so false. Last time I tried to read my chest x-rays I thought the large mass in my left lung was some awful infection... nope, just my heart. Of course, I worried about it for two whole weeks up until I saw my doctor. You think I would have learned my lesson, right? Once again, false.

Today I went to get a chest x-ray. I brought the films home with me so I can make sure they get to the CF clinic with me for my February 17th appointment. At first I swore off any peeking at the films considering my last attempt. That oath lasted all of 32 seconds. The first thing I saw when I peeked was my port, this being the first time I'd seen it on x-ray, and i was surprised by how strange and alien it looks inside me! That was a weird moment for me. I think my lungs look about the same as they did last time we x-rayed... I think. I always get nervous when I see "cob webs" in my lungs (my doctor's words, not mine), a.k.a. the foggy, murky, web-like stuff. I can never tell if it means scaring, infection, or just plain bronchial tubes. We shall see!

I don't know how to read these x-rays, that much is obvious, but I do love looking at them. I can only hope that my doctor shares the sentiment when I see him next week.

Any radiologists out there? Here's an exclusive look at my lungs for my awesome readers!

Retail Therapy

One perk of two hour treatments twice a day is lots of "me time". Another far superior perk is plenty of time to shop online! You all know that I tend to blog and treatment but during the holidays I knock out almost all of my gift list while on my nebulizer and vest. Glamorous, huh?

This month just happens to be a Tobi month. Usually I would whine and whine and whine about this but I'm actually secretly rejoicing in the fact that my treatments are significantly longer this December. No one can bug you or demand your attention when you're busy saving your own life, leaving me two solid hours of power searching, shopping, and shipping. Who can argue with that? I'll still whine about Tobi a little. Can't let that antibiotic think I welcome it's nastiness. I do appreciate it's effectiveness, though.

Happy holiday shopping to all of my sweet family and friends!

When Good Blogs Go Bad...

Things get moved around, apparently. There is supposed to be a column with the months and dates of all my little postings right over thataway -->. As you can see, it is not there; instead, said cutesy column with important stuff is down at the very bottom of this page. Why, you may ask, has it relocated to such a ridiculous place? To annoy me, or punish me for neglecting it these past few months. Either way, I can't figure out how to fix it and it's annoying the heck out of me. Really, I had nightmares about this stupid, stubborn column. This explanation had to be written for two reasons: 1) so you folks don't think I did this on purpose or just to annoy you as my blog did to me, and 2) just to vent because it's bugging me that much.

A word to the wise: don't neglect your blogs people, they get cranky.

Happy Birthday, Papa.

Today would have been my Papa's 94th birthday. Missing him so much. This world was lucky to have him for 93 incredible years.

La Vida Loca

Yeah, I went there; I just used a Ricky Martin song to describe the months since my last post. Desperate times folks, desperate times.

So, let's catch up. I've been avoiding this post because I know I'm going to cry, it's inevitable. I wrote my last entry late at night on September 15th. The very next morning, just before 8 A.M., I received a call from my Grandma Helen. Her shaky voice immediately told me what I had suspected as soon as I saw her name on my caller I.D. at such an early hour, my Papa had passed away during the night in his sleep. The weeks that followed were sad, hectic, and confusing. I knew my papa's time on this Earth was short, I'd even mentioned that here, but it didn't make his funeral any easier to attend. My papa was incredible, truly incredible. Words can hardly do him justice. I am so lucky, blessed and fortunate to have had him in my life. See, told ya I'd cry.

So hi. Hi to everyone I've been neglecting and hi to my awesome friends and family who read my sporadic posts. I have to say that my decision to warm the bench this semester and not attend classes was such a smart one. This void in my schedule has allowed me to spend time with my grandma now that she's on her own while still maintaining my health. Now that I mention it, my health has been good verging on great. The only issues I've had have been port-related. In fact, my port issues call for their very own paragraph.

Since I got my port in May I've only used it for IV antibiotics once. I still head to the hospital once a month to have it flushed and ensure that there aren't any issues when I do need the line. When I went for my flush this month the nurse was unable to get any blood return from the line. The medication was flushing properly but when they pulled back for blood nothing happened. This is usually a bad sign. After a few tests the following week, my doctor decided it was simply a clot at the end of the line. While this clot prevents any blood draws from the port, it doesn't affect anything going into the line. So my port works... kinda. I wish it was fully functional but I'm just thankful it works at all! My doctor's first thought was that it would have to be removed. Phew! Dodged that bullet.

Other than my port drama, I've been in relatively good health. I did have to take a trip to the emergency room this weekend for what turned out to be a kidney infection. Uncharted territory for this girl! Luckily the cure was as simple as Cipro and some pain pills. I have a clinic visit coming up in a few weeks that will really tell the tale as to my overall health. If my doctor wants to do what I think he wants to do (which he will) I will probably end up in the hospital for a couple weeks at the end of December. The purpose for such a stay is what CF docs like to call "maintenance"; fancy schmancy talk for getting ahead of any and all infection. I'm by no means jazzed about any time I have to spend in the hospital but I won't protest too much this time. If I'm being truthful I will admit that I feel myself teetering on the edge of health and sickness so a "maintenance" stay might be for the best. I'll let y'all know what happens.

I hope this post finds you all happy, healthy, and already started on your Christmas shopping... unlike me.
:)

Frolick. Play. Treatments.

Coffee chats with Grandma Inez, laughs with my sister, lunch dates with Allie, lazy days watching my favorite shows, quality time with Grandpa, and lots of treatments... that's what I've been up to the past few weeks. I have been so pleased to spend my time with such amazing folks. I truly am so very lucky. Tomorrow night the fun and frolicking continues! How could I possibly top the activities listed above, you may ask... with MAROON 5 tickets of course (insert appropriate shriek here)!!! I love them oh so much and may or may not know their entire CD backwards and forwards. I'm more than a little excited. My friend Kelly and I are dressing up fancy-schmancy and going to dinner then the concert. Woohoo! I know, it's almost too much fun and excitement for one little blog post.

On a little less exciting note, I've also been fighting an infection that seems determined to inhabit the dark and scary parts of my lungs. Don't fret, I seem to have fought it off for the most part. Still feeling crumby in the mornings and at night but I have a few prime hours in the middle of the day when I am able to breath easier. The times when I can't breathe easy really freak me out. I don't know if it's unique to CF or if everyone feels this way but I swear that each illness or bug makes me feel less and less resilient. Very frustrating, especially since I'm such a basket case already. I'm a bit of a control freak, type A personality, and ultra claustrophobic with a giant side of anxiety, so when I feel like I can't breathe (as such is the nature of CF) I freak out a little... okay, more than a little... a lot. Just this bug that's been threatening to invade my lungs has been wiping me out. I am thankful that I've had the time and opportunity for rest these past few days. Alright, no more whining in this post; you have my word.

I promise to post a completely bias and adoring review of the concert in the next few days! Like I said, I am SO EXCITED. If you are reading this and you're one of the people mentioned in the first sentence of this post, I love  every second of my time with you. Just saying. :]

Taking A Break

Today is Cierra's first official day as a senior. Aaah!! So exciting. While Ce and most of my friends will be starting classes today, I will not. After much careful consideration and seeking of advice from all the right people, I have decided to take a semester off.

As many of you know, my last semester took quite a toll on me and my health. While I love school and always enjoy my classes, I think it would be best to make sure my health is on solid footing before I run myself into the ground again. Three of my four college semesters have ended with me in the hospital and I'm not eager to go through that again. Hopefully a few months off will allow me to focus on my treatments, raise my lung function numbers, and get the bugs that keep causing these severe exacerbations under control. Fingers crossed!

There was another major factor in this decision: my 93 year old grandpa. His health is failing quickly and I'm afraid that he won't be around much longer, much less at the end of the semester. His wife, my 80 year old grandma, also needs help and support as she has decided to keep him at home during his final months despite her failing health as well. Taking some time off of school will allow me to spend precious time with my grandpa and help Grandma care for him and herself.

Come spring I plan to enter the EKG Technician Certification course at TMCC. This course would open up a wealth of career opportunities while allowing me to finish my degree when I feel healthier. I'm pretty excited about this plan.

I've spoken to a few people who have adamantly argued against this decision but I'm confident that this is the best option for me right now. So much of Cystic Fibrosis is about getting ahead of infections and taking preventative actions; this is my preventative action. Thank you to my Aunt Maria, my dad, Allie, Grandma Inez and Cierra for being so supportive and just plain amazing. I love them!

Obsessed

Currently, I can't get enough of the following things:

-Iced, soy, sugar free, vanilla lattes
-Marc Anthony's voice
-Jensen Ackles' face
-Those wickless candle wax-melter things... my house smells amazing!
-Things that are mint scented
-The King's Speech
-Purple and green
-Girls nights with my Cierra and my Allie!
-Sleep
-"Faster" by Matt Nathanson
-Supernatural (possibly because of Jensen Ackles' face)

Just in case you were curious... or extremely bored. Either way, you're awesome.

Summer Adventure #1: Salem Wedding!

Like I said in an earlier post, this summer was INSANE. We had two weddings to attend in two different states, one of which my dad was officiating. Our first summer adventure was wedding number one in Salem, OR (not officiated by my father).

We drove up on a Tuesday and returned home the following Tuesday. Cierra, my dad, and I had a truly amazing time! The Jenkins also came up for the wedding (bonus!). The word that comes to mind when thinking about this trip is "fulfilling". While the folks that I call my "Oregon Family" aren't actually blood, I feel at home whenever I'm near them. And Salem, I kid you not, is one of the most beautiful and wonderful places on Earth. If you haven't visited you're missing out.

Ce and I spent almost every day helping out with pre-wedding craziness and preparations. It was a busy week but so worth it. I already miss my favorite Oregonians so much! Here are a few pictures from the wedding reception courtesy of the lovely Terry Jenkins (since my summer aversion to responsibility and commitment obviously extended to picture-taking). The wedding was perfect and reflected just how amazing the bride and groom are.

Summer adventure #1 = SUCCESS!

Emily, me,  & Cierra in our purdy dresses.

This picture made my day. Hilarious!

We so dang cute.

Familia!

Show 'Em Your Scars

Yesterday, I read a Facebook post from one of my high school classmates. The post was, "If you want to get to know someone, show them your scars". I know that what she meant was all figurative and deep but my interpretation was a literal one. That little line of words really made me think, hence this post.

Just a few months ago I wouldn't have had any major scars to show. Sure, I have a few PICC scars and the faded marks on my abdomen where they stole my gallbladder but nothing that's ever drawn looks or questions, until now. Of course, I'm talking about my port scar. It ain't pretty. When I first realized that it was shaping up to be quite the scar I had to decide whether to cover it up or just let it be (cue The Beatles please). I say I had to "decide" but, truth be told, my mind was already made up; I wasn't going to let a scar change what I wore or how I acted. That didn't stop people from asking about it or noticing it though, one girl even asked if I'd had heart surgery! When curious folks question the cause for such a scar I usually tell them the truth (CF, IV antibiotics all the freakin' time, PICC's are bad, ports are good... the whole spiel). Pre-port I never would've told random strangers these details of my life, but post-port I acknowledge said details and discuss them quite frequently.

 Every once in a while I do get self conscious about my scar and the teensy bump underneath it where my port sits. When that happens I just repeat the words my CF friend Tabitha (Fun fact: in the CF community other CF friends are called "Cysters" and "Fibros"... cute, huh?) once told me, "I don't feel embarrassed about it. It's a battle scar". Truer words were never spoken, er, typed. Circling back around to the whole point of this post, thank you random ladies in my life for making me appreciate silly things like the ice-breaking qualities of funky scars. Maybe nowadays I'm a little closer to everyone I meet because I choose to show them my scar.

Summer Slacker

Hi there!

It's been awhile. Too long, if you ask me. These past couple months have been busy, crazy, joyous, relaxing, stressful, and refreshing all at once! My lack of blogging has less to do with my summer plans and more to do with my hopes to avoid commitment, responsibility, and CF as much as possible this summer. Those of you who know me well know that I tend to over commit just a bit; this summer I tried my best not to. In fact, I tried to slack as much as humanly possible... and let me tell you, it felt GOOD. I do apologize for being so darn unreliable.

Anywhoo, this next week before school starts up again I will blog at least 2-3 times and chronicle my summer slacking. I also have some new things to write about regarding my plans for this semester. Yay!

Below is a little sneak peek of the fun I had this summer: me revving a '68 Chevy Impala SS convertible!! I hope each and every one of you enjoyed your summer as much as I did! :)

-Haley

I Haven't Been Kidnapped

... But most of you knew that.

I apologize for my lack of posting over the past few weeks. I have been pretty burned out on anything CF related. Unfortunately, that included my poor, neglected blog. I'm finally feeling a little less reclusive.

I have so many things to write about! Where to start? How about where I left off in my last post. I had my port accessed and that was a pain, a painful pain in the butt. Dr. Hulka did a great job placing my port so that it wouldn't be totally obvious but that also has a downside when it comes to access. Apparently, placing it deeper and therefor making it less noticeable also makes access more difficult. Also, the scar is directly above the access point. This first week it took three stabs to get the line placed. The second week it only took one try. Woo! This last week (the third and final) took another three tries. Not the best experiences of my life.

Other than difficult accesses and itchy dressings, this port thing isn't too bad. I'm able to wear t-shirts that cover it up completely and if you didn't know I had an IV in you definitely wouldn't be able to tell. That's a huge plus over the PICC lines. Also, the nice people at Arlington Clinical were able to put my high doses of antibiotics in syringes instead of pumps. That way a full dose of both antibiotics only takes about 20 minutes instead of two hours with the pumps. Those darn antibiotics haven't been very nice to me though. The first week was really, really tough. I was sleeping about 18 hours every day and when I was awake I didn't have the energy to do anything. Nausea also visited me more than a few times during these past few weeks. No fun. My body seems to have adjusted now and I've had more energy the past few days. Here's the great news: I get my IV pulled on FRIDAY!! Yeah, I'm just a little excited. I also have a doctors appointment with Dr. Budhecha on Wednesday and I'll let you know how that goes.

So what have I been doing to help pass the time between IV treatments? Hanging out with my Cierra and Allie! Gosh, I love those two. Supernatural marathons with Ce and nights at Allie's playing Candyland and Apples to Apples. These two have been incredible distractions. :)

All in all it's been a good few weeks but I couldn't be happier to get this IV out of me. Thank you to all of you for being such awesome friends and family. I don't know what I would ever do without you. I'll try and check back in sooner rather than later!

A Few of My Favorite Things

Just finishing my last treatment of the night and I thought I'd give a little credit to the things that make my treatments a bit more bearable these days.

--My favorite TV shows: Grey's Anatomy, CSI: NY, Pretty Little Liars, Bones, and Frasier (just to name a few)

--Marathons of my favorite TV shows

--Wireless headphones to hear said favorite TV shows over my machines

--Orange Gatorade

--My NOOK 

--eBooks

--Real books
--Coffee Frappuccinos

--Facebook

--My dog Max

--Slurpees (my guilty pleasure)

--DVR

--Funny, sweet, or just plain pointless text messages

... And most recently? This blog!

It's About IV Time

I've finally been approved for home healthcare thanks to the hard work of my doctor and social worker! I'll head over to Arlington Clinical tomorrow at one and they'll access my port for the first time. Woo! After they access the port and secure the new line I will be free to go home and hook up my antibiotics.

While I'm both grateful and happy to have all these amazing people on my side and finally get this insurance fiasco behind me, a three week course of IV's doesn't excite me at all. Plus, it's a TOBI month starting tomorrow. Tobramycin, a bi-monthly antibiotic I inhale through my nebulizer, wipes me out on a normal day. The combination of 28 days of TOBI and 21 days of two different IV antibiotics is definitely going to take it's toll on me. So here's to my last carefree (sort of) night for a few weeks. I think I'll spend it watching reruns of my favorite TV shows!

The light at the end of this three week tunnel is a road trip to Salem, Oregon with my sister. A giant woo hoo for that!! We're headed Northwest for the wedding of two close friends and to spend some quality time with our favorite Oregonians. My dad and godparents will be flying up too. Saying I can't wait would be an understatement. We always have an awesome time in Salem!

Besides being a little nervous about tomorrow, I'm doing pretty good. I feel great aside from some exhaustion that just won't go away. I've been so blessed to spend a lot of time with Allie, DJ, Terry, and Dave throughout this whole process. They always know just how to brighten my day or take my mind off of things. Aunt Maria has also been a rockstar. Calling daily to check on me or just listen to me whine, she's been there. I love these people! And everyone who reads these ramblings. :)

Hoping that tomorrow will be an easy day and the access won't be too uncomfortable. I'll blog about it and let everyone know! Hope everyone has a wonderful Thursday night.

Because I'm a Nerd: CF Stats

At my clinic appointment at Renown last week, Dr. Budhecha and her Physician's Assistant Kathy brought me lots of new papers to sign. Usually this would be suspect behavior but on that particular day I had heard the excited whispers on my way into the clinic.

Our little CF clinic was officially accredited last year, which is a HUGE deal and means we are on the same level as Stanford and other respected CF centers. Yes! With this accreditation came the opportunity to be included in the CF Registry. The CF Registry is a list of all the CF patients at accredited CF centers and all of their information, including weight, age, BMI, treatments, specific gene mutations, medications, lung function results, sputum results, bacterias and more. All this information allows doctors and researchers to discover trends, increases in average life expectancies, and possible new and more specific treatments. Last Friday was my day to enroll in the Registry. Yay!

Although I wasn't included in the 2009 registry, I still found the information in the link below very interesting. There's still so much I don't know about this disease but I'm learning more and more every day. Especially with the help of organizations such as this one.

If you're curious about CF trends and statistics check out the 2009 CF Patient Registry Report below!

Patient Registry Report 2009

I'm a Liar... And Other Semi-Important Updates

Titling this blog "The Daily Haley" was extremely dishonest of me. This blog should really be called "The Biweekly Haley"... but that just doesn't roll off the tongue quite as well. I am pretty stinkin' excited to hear that my friends and family are reading my sporadic posts. And, apparently, they like them! I couldn't be happier to hear that.

I had my surgical follow-up appointment with Dr. Hulka today. She was very happy with my incision even though one end of it seems to be bothered by "skin separation" despite two rounds of stitches. It's nothing serious, just makes for a strange looking scar. There are worse things. Dr. Hulka is awesome. I know I've mentioned that before but I just have to say it again. I know what you're thinking, "This girl thinks ALL her doctors are awesome!"... yes, but no. Different levels of awesome, not quite the same level as Dr. Budhecha (hey, they can't all be saints).

Speaking of Dr. Budhecha, I ran into her at Renown on my way to Hulka's office this afternoon. I was reminded (as if I needed a reminder) why she is such a special doctor and I am seriously SO blessed to have her. We chatted in the hall for a few minutes, she looked at my incision and gave it a thumbs up, then we started talking about the insurance fiasco that is now stalling the commencement of my course of IV antibiotics. Not only is she trying extremely hard to work around my specific requests but as we were talking she knew who my insurance providers were, in the correct order, and how the systems should be working together. I have a lot of doctors and she is the only one who takes the time and cares to know and research that information. And remember it! Like I said, she's a saint. She also called me earlier this week after office hours and gave me a pep talk that nearly sent me into tears. I just can't say enough good things about her, as you can tell!

Now that I've mentioned the insurance fiasco I'd better devote a paragraph or two to it. I was approved for Medicare earlier this year and it took effect just last month. Before Medicare I had Tricare as my primary and only insurance. Tricare and I got along just fine, in fact, I hardly had any trouble with them ever. For some strange reason when Tricare and Medicare get together Medicare becomes the primary and Tricare becomes the secondary insurance. If it was any other insurance besides Tricare, Medicare would take the backseat as the secondary. Now the fun starts.

The whole point of IV antibiotics through the port is to keep me out of the hospital where I would be exposed to countless dangerous bacteria. As a rule, doctors want CF patients in the hospital as little as possible because of the high, high risk of contracting other infections. So to avoid all of that doom and gloom we get IV antibiotics at home delivered via a home healthcare provider and a home health nurse that visits once or twice a week. Unfortunately, Medicare doesn't cover home healthcare unless you are homebound, which I am not. The only other alternative are frequent visits to the infusion center to get my daily doses of antibiotics. Dr. Budhecha isn't too keen on that idea because it's still essentially a hospital. Luckily, we have Danielle the Social Worker as our secret CF weapon! She has been hard at work all week fighting with both insurances. I'm hoping Danielle is able to work some magic because home healthcare sounds so much more appealing than either of the other options.

Other exciting business going on this weekend:
-The Reed High Art Festival was tonight and Cierra had SEVEN pieces on display.
-Tomorrow night is Cierra's Junior Prom... which means a very busy day of running around for my dad and I.
-Sunday I will finally be well enough to go to lunch with my grandparents for the first time in over a month. Yay!

I think that's everything. You may now consider yourself officially caught up! Thanks for reading!!