Skip to main content

Back Work, My Clinical Trial, & the Final Countdown! (Pin #3)

Updates:

I want to take a little time to update everyone! First of all, as you know I took a medical withdrawal from school and took a medical leave from work. I've been back to work for about 2 weeks and I'm sooo glad to be back. We switched my hours from store closer (close 1am) to the opener (open 9:30am). Day shift is much more conducive to doing all my nebulizers, eating, working out, etc. Plus, we have a new store manager, who had a best friend with CF. Sadly, her friend passed away when she rejected her new lungs. But thanks to thanks to that friendship my boss understands completely and checks-ins with me to make sure I'm keeping up! Withc is nice to know she cares! She makes sure the scheduling works with my meds too!  I HAVE been doing them all. Still 100% compliant with my nebs since I started the Trial in November! so 3 months compliant with all 9 breathing treatments and all the oral pills I take too! So yay!

 As far as the medical withdrawal from school. I finally got a call about the appeal I filed for my tuition back. They called me Monday saying I will know by the end of this week. So if they don't call by Friday, I will be calling Monday morning! I want all that money back, why have a loan out, when I can get my money back and pay it off. I have enough student loans from Undergrad, I don't need anymore, thanks! As I said I'm 100% compliant with nebs since my clinical trial started in November, which means I'm halfway done with it! Only 4 more months! After the trial is over, I'm going to push to get my G-tube taken out Read about why I want it out here! My weight is still doing good and hopefully at my next clinic on the 13th I will improve in lung function too. I'm currently 50%. I tend to be low 60s- high 50s. So I need to get it back up to the 60s!!! I'm working on it, but its not improving like I want it too. With my being back to work, I have a little less time to concentrate on health, but I know it's a priority. Also, in my spare time I'm planning a CF WALK in my hometown- PRINCETON, please consider joining us: Read my last post about the CF WALKS here!  In 4 months is the CF Walk and my clinical trial ends around that time too, so I will find out around that time whether my tube gets taken out too! Gotta work hard the next four months to make sure it all turns out the way I have hoped! Okay, now for an update on Laura, she is still fighting and trying to get through the transplant evaluation, she still needs to raise a lot of money though! On the lower right hand side of my blog I have a link to her donation page if you want contribute!

I'm trying to use my time wisely to manage everything, make sure the apartment is clean, I get some real estate homework done, I can work all my hours at Family Video, and try to spend a lot of time promoting the CF Walks. I'm trying to lift weights and use the treadmill every couple days too! I feel like I'm always busy..Right now I'm not attending classes at a campus and I'm not doing any theatre, so its a little better than usual. What's it like being me? Well, a friend shared a great Article about "Spoon theory" Blog about the theory & walking in my shoes!

But I do find ways to save time. For example: My Pin-Challenge I was about to post for February is the yogurt bites that I make:

 Also I made some frozen smoothie packets too which I saw on Pinterest. Not the most attractive cookie tray, but you get the idea! I just freeze spinach for my smoothies, also I keep Kefir & milk always in the fridge. Love my Kefir smoothies! To the right is a picture of the yogurt bites, just pour yogurt into a ziploc bag and snip off one corner. Squeeze out into  lilttle bite sized bits onto the cookie sheet and freeze, I just store mine in a freezer bag. I love the variety of
flavors yoplait yogurt has available. Some of my favorites include: Blueberry, Key Lime Pg ie , Strawberry Cheesecake!

They don't shave a lot of calories, but they are sooo tasty! My boyfriend eats them more than me, just because I opt for more calories like pretzels or something.

I save time by freezing some meals ahead too. We usually make dinner that is big enough for 3-4 people, so we can re-heat the next day for dinner or lunch. I'm on the go for work now, so I can just heat up leftovers when I get home and not have to cook a whole meal, which I can be too tired to do (depending on how many hours I worked). Anyway, those are just some of my time saving tips! And hopefully, this was a better update on everything that has been happening!

 Thanks for following along, let me know if I forgot to update you on anything or have any ?s! THANKS!



Labels:

Comments

Post a Comment

Popular posts from this blog

5K. I could cry. Beyond Annoyed.

My 5K I paid my registartion fee weeks ago, have been training and I'm ready for the 5K. However, I didn't get to run my 5K today. Why? Because Cystic Fibrosis decided to one up me. I got my spots back friday, and they just got worse and worse. They look like this: They take over my feet, and sometimes my calves. I posted about this a few weeks ago. I had them during the last few performances of Hairspray. I call it the "Mummy disease" because when it happens my joints freeze up and I can't move. So the morning of my 5K I wake up and they are on my thighs...     and on my arms. This is the worst they have been in years. I took pictures to show Dr. B at my clinic on the 11th.  I'm just really bummed and upset about my weekend! I was supposed to run my first 5K!!!!! I then had a bags tournament in Peoria for the Dream Factory, and was then going to head to Champaign for Sat night- Monday! My friend Alex, reserved me a ticket for Ren...
5 comments
Read more

Calling All Who Care!

     Please Read : Okay, so first off I want to say that this post is tough. It's tough to think about and write. However, it is extremely important and a huge topic in the CF Community, and is VERY NEAR AND DEAR to MY HEART!  First I want to ask you... What if I told you I needed a Transplant. That I needed to reach a certain weight, get my kindeys functioning better, get a higher pain tolerance, and get off a couple medications I take right now. What if I said I couldn't receive a 2nd chance at life unless I reached these goals and I raised a certain amount of money that seems impossible to raise. What if I had been in and out of the hospital off and on for the last year, with many surgeries, had multiple infections and my lung function dropped from 40s to the teens and now is slowly dropping still. What if I was starting to wonder if my decision to go through the grueling Transplant tests was worth it. What if I start to get down about my cf and wondering why ev...
8 comments
Read more

A Hospital at Home

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right!  I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...
2 comments
Read more