Please Request for CF Funding

Please consider taking a few minutes to request support for CF in your state.
 
From the Cystic Fibrosis Foundation -
As you know, many people with cystic fibrosis have to make hard choices about how to afford their care every day. Medicaid and other health programs in your state help ensure that people with CF and their families can afford the treatments they need to live longer, healthier lives. As state legislatures consider their upcoming budgets, let’s make sure the voices of our community are heard and funding for crucial CF programs is protected.
  

Click the link: Advocate for Your State's Budget

or copy and paste link - http://act.cff.org/FQ6xV2E

ALSO...

 

From the Cystic Fibrosis Foundation -

Right now, your lawmakers are determining funding levels for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), agencies critical to the development and delivery of treatments for cystic fibrosis. The CF community knows that robust funding for research and drug review are vital for the development of quality treatments for CF.

Click the link: NIH & FDA Funding

or copy and paste link - http://act.cff.org/Tuw1ye9

 

Thanks to your efforts these agencies received crucial funding increases last year, and we need to keep the momentum going!

To Read Jen's full blog or send a message, visit: www.jensbreath.blogspot.com

 

Please note, these links take you to an external website which is not part of this blog and is not monitored by the blogger.

I'm 32 and Doing Well

Hello friends, blog followers and supporters of Cystic Fibrosis! I'm sure some of you thought I fell off the face of the Earth... well obviously I didn't. :)

It's been 7 months since my last post...(shame on me), but I guess I didn't really have much to post about, which that's ok. Sometimes no news is good news, right?

This winter I stayed away from people and children as much as I could to maintain tolerable heath levels. I literally went to work and home most nights. On those days when the pantry was getting bare, I'd finally give in and go grocery shopping. Lately the weather has been much more pleasant and I've been soaking up the sun when I can. The dogs are loving it when I take them on walks too. :)

Back in October I was at the highest weight I had been so far in my life time. I somehow gained a fast 7 Lbs. My pants reminded me of that daily. I finally had to get new ones - meaning Goodwill Store or second hand...my favorite options for my wallet. In November, around Thanksgiving, my Grandpa passed away and the day after we laid him to rest I got really sick. It lasted weeks and I lost that "extra" weight. As a result, I have a "fat pants" pile now. Several months later I'm trying to gain back at least 3-4 Lbs for the next time I get sick.  

I know some of you just rolled your eyes when you read that. "Wow...4 pounds. You poor thing <cue the eye roll>." Actually, I think it is a big deal. First of all, how many of you are less than 5 foot short? I don't see many hands. I'm only 4' 10.5" on a good day so extra pounds are more noticeable. As for needing to gain weight, my CF pancreas insufficiency makes it difficult to absorb the fats that are needed to help maintain weight and that's why I have to take enzymes with each meal/snack. So, a few pounds really does make a difference. See...I wasn't making that up. : /

Anyway...I felt "sick", also meaning sicker than normal, until about the end of January. I remember at Christmas time, just after my 32nd birthday, I started 21 days of Cipro 750 2X day. I am truly grateful for what that medicine has done for me when I'm sick. TRUELY.

Since my last post, I have also started using Fluticasone for my nose.  As some of you know, the nose can also mess with your ears. For the last couple years, my ears would fill so the sound was muffled. It would last weeks sometimes. I'm also using ProAir inhaler when needed. Daily I am using my VEST and Pulmozyme nebulizer meds. I've been trying to drink Ensure Complete - the chocolate kind of course - more often. I take Creon 24,000 for each meal and I am trying to be better at taking my CF multivitamins more regularly. I know that my quality of life, if I even still had one, would be drastically different if these medicines didn't exist! I'm so grateful.

Recently I was reading through the 2014 CF Registry and discovered that Illinois was 1 of 8 states with 1,000+ CF patients. Hawaii only had like 17, but I'd still move there, don't get me wrong....
I also learned that CF people 18 years and older: 41% married, 35% work full time and 48% meet BMI goals. Adults 30+ have an average of 63 FEV (lung function measurement, which raised from 43, 20 years ago). The average life span is 39.3 years.

I appreciate all the efforts that go towards finding a cure and supporting me through this journey. THANK YOU.

Until next time, I'm going to keep singing LOUDLY with the lungs God gave me.  

To Read Jen's full blog or send a message, visit: www.jensbreath.blogspot.com