Cheriz: My life with Cystic Fibrosis

I will be posting about the CF Walk, once we have all the photos, etc! I promise it will be soon. However, I would like to talk to you about our job/insurance situation I will be calling my health insurance tomorrow to go over all of the issues, so I don't write this for sympathy or advice. I just feel I need to share exactly what Andrew & I have to consider on a daily basis and how much CF affects every aspect of our life. You all know (I'm sure) that my husband is at a new job now. It has been bit of a crazy life for the last 2 years. He worked at Culvers in the past & had moved up to the position of General Manager (2 years ago) when we lived near Chicago. He LOVED that job and would of been happy there forever, but since each Culvers are individual franchises, the owners don't have to provide benefits. Andrew's employer didn't offer benefits to spouses. That obviously would not work for us, since (we knew sometime in the near-ish future we would be...

I hear a lot of people say "I wish you could get a lung transplant" or "Can you get a lung transplant."   Which is fine and I completely understand. It does sound great.. new lungs right?!?!?! But I heard A LOT of those remarks over the last few months when I was struggling in the 30s for lung function. I wanted to explain. No, I don't want a lung transplant (tx), well not until I have to look at them. And no, I cannot receive one yet, which is a GOOD thing! A double lung transplant is way of extending our life when we are running out of time, it is not a CURE. When someone is waiting for a transplant, they are holding their breath, just hoping to get a pair of lungs. To even be considered you normally have to be below or around 30%. So by that point daily life is fairly limited and difficult, but if you get too ill or drop too low, it you may not be eligible anymore. So I don't wish to ever get that low in lung function, I do not wish to struggle for brea...

I do not post a lot online about Politics, especially on my blog. I believe everyone has a right to vote for who they want (the whole point of Democracy). While I think my candidate is always the best choice, so does everyone else. I always hope voters educate themselves about the people running and understand what their platforms mean. I am breaking my usual silence on politics in the post, because I also believe in freedom of speech. I'm do not write this to bash one person and praise another. It is more to have a place to speak my mind on our current situation in America. I have a lot of worries about Donald Trump being America's President-elect. Besides his hatred for people of other nationalities, color, religion, sexual orientation, etc. Since this blog is focused on sharing my life with Cystic Fibrosis with the world, I will  focus my biggest concern. My title "Do not send me to my grave" explains my fear for my life with Donald Trump becoming President. My...

My Struggles and Triumphs: I have some not so great news to share, but I dread just posting negative blog posts. So for every "Struggle" I will share a "Triumph" -  Struggles in RED, Triumphs in BLUE I was going to make a quick update video for my YouTube about all of this but I have lost my voice . So blog it will be...   However, I'm fortunate to have this blog and be an actual "voice" for the CF Community  --- Thanks to  my readers :-) As you read (or may need to click here to catch up) in my last post, I had my Cystic Fibrosis Clinic last week. Monday, I found out at the Doc's I dropped in lung function again (2x in 2016 already) . I'm down to 42%. Yipes! Since Colistin helped me bring it back to at least the low 50s last time , it should do the trick again ! Please take a minute to read about my struggle in January to get Colistin and why oral antibiotics no longer are an option for me and WHY get sick is getting harder to r...

Normal "beginning of the year" troubles for Andrew and I only really consist of one topic: Our Deductible [please no Obama, or government bashing] I've always had high deductibles ALL MY LIFE (no matter who was president). The problem is I hit my deductible within the first week of January. In the past I have always prepared for this and since I was still on my father's insurance (up until last year) he typically paid the bill (at least for medical stuff). And in the future Andrew & I won't have such an issue with this. We will be able to save and plan ahead for the $3,000 (for my deductible, his is another $3,000). However, this year was more difficult. We saved all 2013-2014 for our wedding & honeymoon, plus had our deductible saved too. But Real Estate was a pricey career to start, I've put almost $5,000 into it (classes, dues, licensing, exam, advertising, etc). So needless to say our deductible disappeared, thanks to my new career. Wh...

Things to Consider: First off, let me tell you that we considered everything I'm about to discuss. We decided extra money out of our pocket to pay more medical expenses was worth it to be married. We planned accordingly for those bills and made our decision. Also know, this topic is always the hardest to write about. It is embarrassing for everyone to know how little I did have (financially). BUT, It is the truth and it because of my Cystic Fibrosis I had issues working. So here is my TRUTH about insurance and financial struggles. Although, Andrew & I ended up pretty lucky though in the end! But, not everyone is as lucky as us! Here is why we are lucky considering the system ( and please no political talk or bad mouthing political figures of either side, I will delete any comments that do. I'm not here to start a political war or debate). I'm not trying to bash our system, even if it has flaws, I'm just here to tell it like we have experienced everything. ...

It Gives Ya Hope: Hope, what? I'm never not full of HOPE right?  No, I always have hope, even when I don't think I do, Sometimes all you need is a reboot, being around family or friends, or just certain conversations. I came home (to my hometown/ parent's house) this weekend. Yes, I call Princeton, home still. But in my defense, I also call my current apartment my home too... I was excited to come visit! My sister, dad, mom, and I don't all get together as much as we would like to. Sadly, Andrew didn't get to come with me, he had to work all weekend. He's saving his time off for 1: our wedding (this August) and 2: any future medical mishaps I have (where he has to take off work) AND you never know with me. So he was bummed to not be able to visit, but Mom, Dad and I skyped with him last night. hahaha. It was hilarious. Mom sitting in front of the computer in her armchair and me and dad stooped over to get our heads into the camera view. Haha. Ada was ev...

Follow up: First of all, look Andrew & I are making banana bread. It's either to celebrate the good news of the purple machine arrival or console me for not getting it.... We'll see. And yes, for those of you who know Andrew went to culinary school. This WAS a joint effort. haha, I cracked the eggs & put the banana in..... and we used our awesome Christmas present (Love our KitchenAid). If you aren't quite sure what I'm talking about... a pretty purple machine? It's been the topic of conversation on my Facebook page called " Cheriz: Living with Cystic Fibrosis "  (consider "lliking it" to keep updated on everything) and I've also talked about it a little bit on my blog over the last 9-10 months. See, It's about getting a new Cayston Machine.  Cayston is one of the nebulized antibiotics we (CFers) can take to keep infections & the bacteria in our lungs at bay. For example: 80% of CF patients have psuedomonas aeruginosa in ...

Does One Affect the Other: In short, No not really. So why write about it. Well, they don't affect each other directly. I actually have found putting together the wedding to be fairly simple and fun. Nobody ever said "Oh its is fun and so easy" You always hear one of two replies. The first being "Its so stressful and time consuming" and the second "It's fun, you'll love it."  So I'm going to assume most people love it and hate it. In this post I'm going to explain some reasons I find planning a wedding easy and enjoyable, as well as some difficulties (including CF topics). Reasons why it has been easy for me. I know the area, venues, caterers, Djs, Photographers in the area. I'm the organizer of the Princeton CF Great Strides Walk  and I've planned numerous other events too. It's all about being strategic and well planned. I took one day I had free and made all the calls for multiple quotes. I knew which caterer I wanted...

Long Day at Clinic: I had my regular Clinic appointment and I went through screening for another clinical trial! I've done two other trials in the last year and a half. Feel free to  Read about them HERE!  I really enjoy doing them! So I'm going to Dr. B's (Chicago's Cystic Fibrosis Institute's) Research Seminar on Sunday. Not only is it 3 hours of lecture about al the old and new trials, but outcomes and implications for us for the future! I love that he is honest, he tells the negative with the positive. Plus, its an amazing restuarant with a beautiful buffet. Shrimp cocktail, omeletes made to order, and even an amazing 3 tier chocolate fountain. I'll probably be a little tired for it, considering I'll be getting home late the night before from a Hockey Game! I was a little nervous about today too, because my lungs have been low the last couple visits. But I was excited to do the screening for the new trial (Inhaled Mannitol vs placebo). My appointment...

My Vitamins & Pills: Well, I had my last Clinic on May 8th and it was pretty good (I even got some super amazing news from Doc)! Feel free to read all about it  By scrolling below this post or just click here!  As you can see I'm super excited, 15 years is a long time to have a stomach tube! It will be amazing after I get it out! However, the only negative thing I have come to find out is my Vitamin D is dropping again. I've had lots of issues with this in the past, at least this time my number is only 50% below what it should be. About a year ago it was practically non-existant. I've written 3 short blog entries before about my Vitamin D levels in the past:  Check them all out by clicking here!  And this is the poster I made to explain the CF problem that is "lack of vitamin D"  I'm doing another 2 week "burst" (that's what doc calls it) of 50,000 units daily of Vitamin D! If you read my previous posts, you see that is an extremely...

Xanadu! The musical Xanadu opened last night! The audience was smaller than what we had hoped for, but with all the flooding and bridges closed.... What  can you do? Xanadu has a great cast. I have loved seeing all of them. When it's over It will be bittersweet. I will miss seeing everyone and spending time with them. I could use the time to catch up on homework, work extra shifts, or spend it doing meds. This last week has been particularly frustrating as the company my Dad works for got bought and our insurance changed. So of course they started denying my meds. I got almost all of it figured out yesterday. But now they said they need a couple more days to straighten out everything with the pharmacy (apparently my CF pharmacy wasn't in contract with them...ugh) So after we looked up stuff on line and I called a couple people, waited on hold for a couple hours, and rationally discussed (lol) everything over the last two days. We have come to an understanding. Except my TOB...