So much has been happening, but with my packing for the big move to Dekalb Area I haven't really been able to blog. So first of all. The walk has received a few more checks.. Our total is above $13,300. But we are expecting to pull in around $13,500! I'm so proud of the community and support we received (read about the CF Walk in my hometown here!)
I can't wait to be done packing, for some reason when I'm packing up the apartment it just gets more messy box by box. Also I'm suprised we own over 300 movies! I had no idea, until I filled up 3 boxes with them. Guess it makes sense, Andrew and I are both movie fans. One reason why I really enjoyed working at Family Video. Why is that past tense? Worked... well...
Oh let the fun begin... I'm still healing from my stomach tube being taken out! If you missed that read about the relationship I've had with my stomach tube here and then read about how doc surprised me when he took my tube out here! Which is why it is taking FOR-EV-ER (Sandlot style) for it to heal. I understand that putting me under is an unnecessary risk when it can heal on its own. It is healing on its own, but taking a really long time. I'm okay with being patient ( I guess, If I need to be), but ask anyone close to me...patience is what I struggle with the most. Well at least it isn't infected and I've had no serious side effects, so this is obviously the better option. Just it's trying my patience.. I can't work until it is healed (because it still leaks and I need gauze to be changed, plus it stings while healing..). I don't want to wait another month or two to go back to work and I'm starting to take classes this fall, so that will definetly make life a little more difficult. I think I just have to wait for it to heal more and stops leaking before I go back to work. Until then I will just focus on other projects and will take the two classes a week (starting next month) and WAIT... Oh, healing takes forever, but at least I didn't have surgery. I don't always have the easiest time waking up from surgery or even recovering. So whew...just tick tock tick tock.
Just gotta keep reminding myself how nice it will be when its healed and I can wear a bikini with no worries! At least while its healing I can still go out and do stuff (with it covered). Saturday, Andrew and I got to go to a White Sox Game and spend the day together in Chicago. He works so much 50+ hours & full time student, we never get a chance to have a day together, so it was amazing! We had lunch at Viaggio's (had the best calamari EVER), then I put on my white sox shirt Andrew bought me a few yrs back (we've bought tickets twice and never have gone, due to me ending up in the hospital or having surgery...). SO this time we got to and I of course ate tons : hot dog, nachos, cotton candy.
Best yet: the Six won!
I didn't think I'd enjoy a baseball game that much, but I loved it and I can't wait to go again...Which of course thrills Andrews (since he is huge baseball fan).
Along with all the healing, I've had to fight a lot lately too...
No, not fight with Andrew, family or friends.
Fight with the same people I usuallly do... my insurance.
Lately, I've had ots of problems with my insurance covering my medications. Which is frustrating, because I never had problems in the past. Now, they are trying any excuse to get me to not fill them or refusing to pay for them. All my meds run out at different times and the insurance won't let me do auto-refill...Meaning I have to keep on top of it (which is okay, but annoying). It's tough to remember, when you take over 50 pills a days and 20 different scripts run out at different times.. The insurnace bascially is hoping I forget to refill them. sneaky, sneaky insurance...
Also, they keep switching what pharmacy to use. I'm up to using 4 pharmacies now (keeping track of 4, and having to battle with all of them for different meds is exhausting). I have to fight them and have doc appeal the insurance denials for any med that gets denied (which is any med that costs over $500 pretty much)...Although the insurance always has a "reason" : 1. The medication is cheaper somewhere else, new pharmacy is added 2. Why do you need TOBI, just take a cipro pill... hahaha (oh their substitutes are dumb) 3. There is no proof you need both CAYSTON and TOBI, pick one I'm sure there have been
others, but those are their favorites! HAHA. Doc just repeals until the insurance breaks down, but in the mean time it sucks for me not to have them.
I'm fighting for TOBI right now, luckily I'm doing okay still. But this whole med tango needs to end now! Don't they realize by jeopardizing my health, I'll wind up in the hospital (costing them way more than the monthly price tag for tobi or cayston ($6,000). AND down the road if it keeps up, they are just setting themselves up for paying for a new set of lungs ($600,000) so they are really not doing the math right...
Speaking of lung transplants:
Here is an update on Laura! If you don't know about the fight my best friend is going through, read her story. All 4 blogs I have written about her are right here, just click to read all about her journey to get new lungs!) As you read being evaluated is a long process. I first found out Laura was going to need new lungs in 2012! At that point she wasn't low enough in lung function to be evaluated, but they knew that would be the result. Since then she has basically had to try to maintain her 35% lung function ( today is currently 24%) and hope when she dropped low enough, she'd be approved before she dropped too low (and are considered to ill for TX-transplant). She has been fighting ever since. In and out of the hospital, surgeries, infections, IVs, etc. But she continues to fight. She was told in late 2013 she could be evaluated finally. And if approved she'd be listed. Each center has their own reasons for accepting or denying. She went to a Center in Florida first, and was denied (due to a list of secondary CF problems she has...). Joe (her husband) and I encouraged her to try Duke in NC. They accept more severe patients and are one of the few centers in the whole nation to due transplants even when CF patients have Cepacia B. Laura doesn't have Cepacia B, but she has other issues. Still even with those, I believe Duke will see the fight in her to live! And I'm hoping when she has her follow-up and final evaluation tests on August 4th, she will recevie a acceptance shortly after. All this waiting is horrible. I can't imagine. If doc told me I'd need new lungs (I was on oxygen full time) and I had to wait for them to drop another 10% before I could even be tested for new lungs. Then after waiting a few months going through testing, I have to drive to a new center ( in a whole different state -about 8 hours away from home) for testing over the span of a couple months again... From the start of being told she needed lungs to the day she finds out if accepted it will have been 2.5 years!!!! So keep thinking happy thoughts laura, soon you will hear your final news!!! And everyone else who is reading, please think about this. When she gets accepted (yep, when, I refuse to believe a denial will happen) she will need help! Laura's family lives in California and Illinois. Her and Joe got married summer of 2013 (live in FL), both have many medical bills! Laura's insurance will pay for the lungs, but she has to travel to and from doc appointments, will need extra food, rehab, meds, etc. Also, she will be living off her $700 monthly income from ssi, because that is the highest amount allowed. With her not able to work, they will need help to get through this!
I know if it were me, my entire family, friends, community would support me. I hope you think of her as you would me. She means as much to me, as I do to you. I will keep you all updated and let you know as soon as I do. She has the final appt on August 4th and then just wait a couple weeks for the answer. She is also updating people via her GoFund Me page (thank you to everyone who donated to it in the fall). I did notice that over $280 was raised among my family & friends on her page last fall! Please know Laura and I both thank all the family and friends that donated. We love you!
Just click the picture to the right to donate or check out her GoFundMe page!
Also, Below is the video I first made for her in 2012 when we realized she gonna have to fight through this journey! I'll keep you all posted on my stomach tube, insurance problems, and Laura's fight! Thanks for reading :-)