Tuesday, December 9, 2014

Weekend Craziness

Sorry everyone!

Wow, what a crazy weekend or week I should say! First off, I want to apologize for my blog disappearing for 3-4 days! This will never happen again. I've solved this issue (and even switched companies from where I got my domain), so hopefully this won't ever be an issue again. It was beyond scary when I clicked "view my blog" and the link wasn't working. I have never taken classes on website management (hosting, designing, etc). I'm 100% self taught. It's crazy how much you can learn on websites, YouTube, and good ol' books from the library. However, when something shows an error (like my domain expiring without my knowledge) I tend to freak out a bit. I mean this blog, as much as I love it, I have put just as much work into it. Almost 3 years of my life's rambling are on this lil blog! So whew, glad I got it all sorted out and I'm so sorry to anyone who tried view it and was confused!

So It's back for good. I promise. Okay, in regards to other "craziness" from this weekend. Some of the craziness was good, like people visiting us. The crazy part was the fact my plans completely got changed last minute. I was supposed to visit with my family this weekend, but that got messed up. Which I was bummed about at first... which is why I'm very much looking forward to Christmas and having some time to spend with family & friends! This may be the most up to date picture I have of my family! It was taken 2 years ago (before I even started dating Andrew). Think this year we are in need of an updated one? I do!

But since we were free this weekend, we had a lot of other people visit and had a lot of fun. Friday, Andrew's Mom came to visit. My Uncles visited Saturday and they delivered the mattress I purchased on Black Friday for a super good price! I sooooo excited to get a new mattress, the one had was beyond old and it was affecting my joints (arthritis problems) and my sleep. Now, thanks to them hauling my new beautiful bed here, I have slept like a baby ever since!

Sunday, I was bummed I was unable to go to the Dream Factory Party (read about in post below). However, I've had allergy type problems for the last week or so. I really don't think it is a cold, but that Christmas Party would have kids with compromised immune systems there (cancer, cf, etc). No way, would I go even with the sniffles. So bummed I missed out, but I know all the kids had an amazing time! I really hope I can go next year!

And for the rest of my week: STUDYING! That's right I may have aced my final in the first Real state Class, but I have one more final (in my 2nd class) on Thursday. Then shortly after I'm taking the IL licensing exam. So lots to study! So excited for this career to start (in Jan of 2015). My struggle with finding a career that I will love and will allow me to manage my CF has been difficult. READ about it RIGHT HERE!

Also, if you enjoy this blog and want to learn more about me, my CF, or our fundraising efforts then click here to "like" my Blog's Facebook Page. I post all the new posts on that page too, so you can keep updated!

And again sorry everyone!

Tuesday, December 2, 2014

Postponed Clinical Trial, But Still Celebratin'

Happy, so much to celebrate:

Yes, my clinical trial that I was all set to do the screening for tomorrow has been postponed until Jan 7th. The Clinical Trial Reps want Doc to wait until Jan 7th, so I'll have had a full month off between the closing date of the last trial and beginning of this trial. Which will be 2 months from my last experimental (or placebo) drug, giving it a decent amount of time to get out of my system. Which makes sense, but I understand considering the waiting period between the drug & closing date AND the length of time between the opening/screening and first dose is lengthy enough Doc thought it would still fit protocol. But he is right, better safe than sorry.

So even though that Clinical Trial got postponed I'm still rather cheery. Why? Well, quite a few reasons!

1. I gained a few of those much needed pounds back over Thanksgiving! YAY!!!! Holidays are the perfect time to gain weight, whew. Thank goodness for Thanksgiving! All of my favorite foods are staples during the Holidays, so it works out perfectly! Also, Andrew & I got an early Christmas gift from someone this year and it was a Kitchen Aid Mixer, so I see a lot of cookies, baked goods, and even homemade pasta in my future. Yay, for my culinary boyfriend and fun kitchen gadgets!

2. I special ordered earrings from a crafter at a show (they were purple beaded cure ribbons), I just received them in the mail and I'm so excited to wear them at the next CF event (they have a slight reddish hue to them, but are still cute). She actually sent me a pair of the angel earrings that I was debating on getting at the show too. I bought a pair of cute snowmen and the cure ribbons, so she decided that I was "such a nice girl that she would send me the angels too for free!" How sweet! The angels and the cure ribbons came together in the mail, so of course I couldn't help but think of Laura. She loved purple cure ribbon anything and everything! So that put a smile on my face.

3. Also, yesterday was December 1st! I have this rule that we can't put out Christmas until Dec 1st. And that is exactly what we did! I love
when the apartment has the Christmas décor up, whenever I see it, I'm instantly in a better mood. I have a bit of a cold right now, but with all my Christmas movies and decorations, who even cares. Love it! I bought a lot of Christmas stuff last year after the holidays (on clearance), so I had a lot more this year to put out. And I got two more decorations at craft shows this fall, so my amount of décor has doubled since last year! Whoohoo!  See more Christmas Pics at the bottom!

4. Another reason to celebrate is that it is my Dad's Birthday! Gosh, I'm so lucky to have such an amazing dad! He really is the true definition of hardworking and devoted. PLEASE take the time to read this post: Why my Dad is amazing!  I wrote it 2 years ago, but it ALL is STILL TRUE! So Happy Birthday Dad! I love you!

5. And then lastly, I'm excited for this weekend. I'm traveling with my parents to Peoria for the weekend. Mom's got another (her final one for 2014) craft show. So I get to spend the weekend with my family. Saturday is her craft show and then Sunday is the Dream Factory (of Central Illinois)'s Annual Christmas Party!

The Dream Factory grants wishes to kids with severe medical problems or disabilities (similar to Make A Wish). The Dream Factory granted me a wish when I was 10 years old! I first wished for a Mr. Potato Head Pillow. Then the lady told me I could go anywhere, meet anyone, or have anything. I replied " Can I have a computer, I love using them at School" and then I proceeded to run and get my piggy bank to show I had been saving up for one. And sure enough I got a desk, chair, computer, printer, tons of games, etc. In Dec 2011, I decided to join and volunteer with Dream Factory. I continued to do so, until I moved away in the Fall of 2013. I love the Dream Factory and everything it represents! So I'm very excited to watch all the dream kids open gifts, visit with Santa, and see them get their faces painted. It's adorable to watch and a great time/experience every year!  And it's a great way to start the Christmas Season!

Here are more pics of the apartment! I didn't have to buy a thing this year to decorate!

I had forgotten I bought this table cloth.

I love the pictures my babysitting girls made me 2 years ago! I always put them on my fridge!

Gotta have lots of Window Clings


TV, Fireplace, etc.

Well, I suppose I should go and study some real estate, then perhaps get a jump start on Christmas cards. I'll keep you all  updated about Clinic & the trial on Jan 7th too! Everything is going peachy, so I'm very thankful for that! What are you thankful for? AND Happy Holidays!

Monday, November 24, 2014

Doc Appointment Today

Clincal Trial Appt Outcome:

As you may have read on my Facebook or My Twitter I was a little nervous that I'd end up on IVs today. I was also very nervous about driving in this CrAzy weather. Luckily, Andrew was able to drive and after the appointment we stopped for Subway real quick. I mean $2 subs who can say no?!  And a subway cookie- heck yeah!

The appointment today was my final appointment for the KB001-A Trial I was doing, if you want to read the basics about the trial (posted on CFF) then click HERE! I didn't mind have the 2 hour IV once a month (for roughly 6 months), I'm just excited to read the results and that I got to be 1 of the 180 particpants in the nation that got to be involved!

Right before that psuedomonas antibody trial I did a trial that helped proved the effectiveness of switching Cayston (inhaled aztreonam) & Tobi every other month. That trial was super easy in the sense that I have already been doing that for years. If you want to read the details on that study it is right HERE!Of course, insurance & other reasons need data to back up the reasons that Docs are rotating these drugs. That trial had an electronic diary I had to fill out every night between 6pm and midnight. I had to keep all the used/empty vials too. That was the hardest part. Remembering the journal (I only missed one night in the 6 months) and I'm so used to throwing the empty vials in the recycling that half the time we'd have to dig throgh the whole bag and pick them back out.

So the KB001-A Trial I finished today started 3 weeks after my Cayston/Tobi (Gillead Trial) ended. So pretty much I've been doing trials since November 2013 non-stop. AND the most exciting part is I'm enrolling in another study and start the screening process next Wednesday! This tiral is 6 months. So November 2013- May 2015 I will have done three trials back to back. This study is to looking to a new med/ way to thin the mucus & help it break up! Around 400 particpants will be entered into this study & my Doc's office is accepting 5- 10 people. So I'm super excited to be invovled. The basic info on the trial for Inhaled Mannitol is right HERE for you to read!

Picture: Us waiting for our Appt!

So I'm excited to get that study started! AND now for what you may be wondering about... my numbers!

Well, my first breathing test wasn't so great, but I have to do at least 3 for the trial. And each time it got better and my numbers got higher. Finally, I got around 50% 3 times in a row. So I'm only down 1% from last clinic. That nots too bad and my weight is 100.7 lbs. Its increasing super slowly, but at least it is increasing. I hope this holiday season helps that continue to increase. I explained to Doc about my wheezing, extra coughing, and tightness in my lungs. He listened to my lungs and with my test being almost the same as last time, he said we'd keep an eye on it. It probably is the weather irritating my lungs, I also have really bad asthma component to my CF and my rescue inhaler has been out for over 2 weeks. The pharmacy was having some issues, but Doc is getting that resolved. And since I go back next week for the Screening for the trial (and I go for Clinic every month), He'll be able to keep an eye on me.

I love that he allows me to try to increase the number on my own, instead of always jumping to IVs or oral pills like my old Doc. This might sound crazy, but it is smart for my case. I'm allergic to Bactrum, Keflex, Levoquin, and Ciprofloxacin. This means every single antibiotic that targets psuedomonas aeruginosa (which I have cultured every sputum test since I was a child ) I can't have. The Cipro allergy developed over the years and got bad in 2013-2014. So, Doc thinks my body is becoming resistant/fighting them and we don't want to exhaust all options. Plus, my body bounces back fast (luckily) So I use other methods first. Sometimes a low dose of prednisone or extra therapies. Ususally it works, but his rule of thumb is under 49% usually means 2 weeks on IVs for a tune up to jump the number back up. For example, in 2013, I  went from 48% to 64% in one week on IVs. So as much as I'd love to just have that 64% again. It would slowly decrease again, and constantly going on IVs isn't going to be the best option. So make those numbers last and stay up as long as possible to put off IVS until I have bad infection or big drop in numbers. He's very smart and thinks long term. I loved hearing him tell me about his 70 year old patients (he enver breaks hippa and says personal stuff) etc. Just that basically how old some are getting and how well I can continue to do if I work at it. I love how much he loves that we (his patients) are succeeding.

So my weight is slightly up, lungs 1% down, Asthma issues, but overall my lungs are still okay and Doc thinks I can get my numbers up without Antibiotics! So what I thought would be a bad clinic, its was overall pretty decent! Whew... you just never know.

Besides all those antibiotics I'm allergic to...Did you know I have life-threatening allergy? Besides my immediate family how many people know what it is? I've been looking into medical alert bracelets and for a good reason too. But, I'll save that story for next time!