Thursday, June 27, 2013

Thankful Thursday: Sweat

This is what it takes and I'm thankful I can get down and get sweaty!! Getting in shape is not glamorous work.

Today I'm thankful I can push myself hard enough to sweat like a champion.

I'm telling you, this 10K better watch out.


Saturday, June 22, 2013

Setting New Goals

I'm revving things up a bit. After running a handful of 5k runs I'm ready to bump up to the next level. The 10k is freakishly daunting to think about but I think with a little will-power, muscle memory and grinding my soles on the pavement I can do this. 

When I first started running I shared that journey with you and all the not-so-pleasant experiences in-which that journey entailed. So, why not do the same as I attempt to reach this new goal after all its liking starting over. The 10k is doubling the 5k, so in essence its sort of like beginning the 5k all over again. The training is similar with the exception of knowing I can run for 30 mins whereas when I started training for the 5k I could not. At that time I knew I could walk for over an hour without needing a break. 

Here's to setting new goals and achieving them. I'm officially registered for two 10K's.  One in August and one in September.

My training schedule is as such for the August 10K:

I just wrapped up Week #1 and it feels great to have it done and under my belt. Today, was a fabulous morning for my Saturday run/walk rotation. The sun is out and my lungs felt amazing. My legs are a bit sore but thats to be expected. 

I should note that after each workout I drink a homemade shake that contains fresh fruit and some sort of nut butter to help replace lost calories. 

As a side goal, I want to update you each week with how that week's training went. This will help keep me accountable as well as address any struggles I'm facing or successes gained. Training never goes exactly how I put it to pen and paper. There are times of progress and times of having to take a step back. That's okay and I know that. My body is not a machine but its better, its can adjust!


Thursday, June 20, 2013

Guest Post: Molly Clarke on SSI & SSDI

In light of the recently proposed changes to the social security disabilities criteria for lung diseases and thus CF, I welcomed Molly's words in hopes to gather more information for myself and hopefully allow my readers to gain more knowledge. I've personally gone thru the process of qualifying for SSI and SSDI, so I understand how overwhelming the process the can seem. Having someone you know by name during the process rather than whomever ends up on the other end of the phone call can make this process slightly less daunting.

Below is Molly's contribution to Illness Inspired Words and the first guest blogger post to date!! Find out what Molly has to say.......

Receiving Disability Benefits When Living With Cystic Fibrosis

Cystic fibrosis is often diagnosed at an early age and, although it affects children, symptoms typically worsen over time and cause more severe impairment later on in life. As your cystic fibrosis progresses, you may find that you are no longer able to work. At that point, lack of income and discontinued health insurance may cause significant financial stress.

The Social Security Administration (SSA) recognizes that certain health conditions and disabilities make it impossible for people to continue to work. For this reason, the SSA offers Social Security Disability benefits to provide financial support to sick or disabled individuals who are unable to earn a living.

If you are interested in learning more about Social Security Disability benefits, the following article will give you a brief overview of the system and will provide you with a basic understanding of everything you need to begin the application process.

Social Security Disability Benefit Programs
The Social Security Administration (SSA) provides two different types of disability assistance. The first type is called Social Security Disability Insurance—or SSDI. SSDI is funded by Social Security income taxes that are paid into the system by workers across the country. Eligibility for SSDI is determined by an applicant’s work history. The SSA assigns a certain number of “work credits” to each applicant to determine whether or not they qualify for SSDI. Learn more about SSDI and work credits here:

The second type of disability assistance is known as Supplemental Security Income (SSI). This program provides financial assistance to elderly or disabled individuals who have very little income.  To qualify for SSI, only an individual’s finances are analyzed.  Young applicants or applicants who have little work history often turn to SSI if they do not have enough work credits to qualify for SSDI. Learn more about qualifying for SSI here:

It is important to note that in some circumstances, applicants may be eligible to receive both SSI and SSDI.

Qualifying for Disability Benefits
In addition to meeting the technical requirements mentioned above, you must also be able to prove to the SSA that your cystic fibrosis symptoms are severe enough to keep you from working.

To determine whether or not an applicant medically qualifies for disability benefits, the SSA consults an official manual of disabling conditions known as the blue book. 

Cystic fibrosis is listed is listed under section 3.04 of the blue book. According to this listing, you must meet the following criteria in order to qualify for benefits from either program:

·       Trouble Breathing – Breathing tests must show that you are experiencing significant difficulty breathing for someone of your height.

·       Lung Problems – Cystic fibrosis has caused you to repeatedly cough up blood, or has resulted in recurrent episodes of pneumonia, bronchitis, or respiratory failure that require medical treatment.

·       Chronic Infections – At least every six months you experience lung infections that require antibacterial medical attention.

If you do not meet any of the specific qualifications listed in the Blue Book, you can still be approved for disability benefits if you provide medical evidence that demonstrates that cystic fibrosis significantly limits your ability to function.

The Application Process
To begin the application process you can visit the SSA’s website or make an appointment to fill out the necessary paperwork in person at your local Social Security office.

It is important to note that you will need to submit many different types of records along with your application. These records include accurate financial information, a history of your treatments and hospitalizations, lab reports and examination findings, letters of recommendation from your physicians, as well as any other relevant documentation. The more thorough and prepared you are before submitting your application, the higher your chances will be of receiving an approval.

Even if you meet all of the medical and technical eligibility criteria, the application process can be a long and challenging experience. In fact, the SSA rejects the majority of the applications they receive each year.  If you are feeling overwhelmed or intimidated by the application procedures, it may be in your best interest to work with a qualified Social Security Disability attorney. He or she will have a thorough understanding of the application process and will make sure that your application contains all the necessary information.

Remember, even if your initial application is denied, it is important that you don’t give up on your pursuit of disability benefits. Although the application process is often difficult, Social Security Disability benefits exist to help you. Once you are awarded benefits, you will be able to focus on your health, rather than your financial struggles.

For more information about Social Security Disability benefits, visit Social Security Disability Help or contact Molly Clarke at


I always welcome questions and will offer as much advise from my personal journey with SSI & SSDI as I can, but for legal or technical questions you really should reach out to Molly. She'll know how to steer you in the right direction to get the help you need.


Friday, June 14, 2013

Sleep or the Lack Thereof....

I couldn't be more thankful that its Friday. I've been struggling with sleep lately which is largely why I'm excited for the weekend. No real obligations to be anywhere but church. Its amazing how quickly I run out of gas when I can't sleep. I hear people chatter about how little they sleep but yet still function at a high level. I'm not one of these people. 

About a month ago I did a home version of a sleep study, the results came back as inconclusive, its no wonder the machine they had me "rent" was huge and it had to rest on my chest. I'm a stomach/side sleeper so this was a  no-go for me.  So I'll be going into the sleep lab to redo it. 

B tells me all the time that I snore. In some cases he goes and sleeps in the spare room if he has a long day ahead of him. It was actually B's idea to seek out doing the study. Apparently, people with chronic lung disease have a high risk of having some form of a sleep disorder. This laundry list of secondary and third-endary diseases is ever expanding. Just sayin'

I've come a crossed a hand-full of CF'ers who have also done the sleep study and some of them have been sleeping with oxygen while others sleep with the C-PAP. I'm really hope I don't have to add yet another machine to the mix while I sleep, it already takes me too much time to unhook for a bathroom break in the middle of the night. Geez!

Maybe once this sleep thing is figured I'll have more energy, motivation, and be an overall more balanced person. 


Thursday, June 13, 2013

When the Unthinkable Happens....Are You Prepared?

The one thing I can say without fail is that life is a roller coaster ride. I'm not sure how I "feel" about that. 

May was National CF Awareness Month, for which I hope I was able to give you different information then what most typically read and/or hear about CF. You know, to broaden your knowledge of what CF is and how it affects those of us with it.

However, as May was approaching an end a tragic townhouse fire took the lives of a husband and 11 yr old boy. They were our neighbors and only 4 town-homes from us. Needless to say, it shook B and I up BIG TIME. 

The town-home is now boarded up with crime scene yellow tape around it. We drive past it multiple times a day. We can see it from our front yard. It's a constant reminder of what occurred early that Thursday morning.

We, took away from this tragedy that you never know what will happen in this life. Much of the time I fret about what my future may not hold due to CF but it very well could end up being something completely unexpected that interrupts my future plans. 

We, also took time to reflect on what our personal safety plans are. Do we have a fire escape route, do we have the necessary tools to successfully implement the escape route, do we know how to work the tools? etc. My answer, sadly, is no. We live in a 3-story town home in-where the bedrooms are on the third floor. We have no ladder, no fire extinguisher, and no planned routes. All we have is working smoke detectors. So did our neighbors.


Look, I'm not talking about getting all crazy and prepping for the end of the world sort of stuff. But let's be realistic. In the event of even a small kitchen fire we are simply not prepared. We don't have fire extinguisher. Do you? Do you know how to discharge it? Do you know when to replace it?

In addition, to adding things like a ladder in our bedroom on the third floor and a fire extinguisher, we have to take into account my medical needs. Should a house fire or some other emergency situation arise that requires us to evacuate our home. I'm connected to a feeding tube machine at night. I can't simply hop out of bed and flea. This will need to be disconnected or worst case be cut before I can flea. Will B or I be of sound mind to remember this? Should I keep a small pair of scissors with my feeding tube supplies on my nightstand? 

Another factor particularly with smoke is my lungs. I don't have the normal capacity that say; B will have to withstand smoke inhalation. The most likely scenario will be that I'm unconscious from it long before he will. This means he'll have to know how to carry me down a ladder if he is able. Have we practiced him carrying something around my weight down a ladder, even a small one? Nope. We have pets, which would be last on our list to rescue, but nonetheless if its possible do we know how? Do I know how to help B in case he's unconscious as I can't lift him even with his help? 

I guess my point is that we all were taught a few things about fire safety in school. There's a reason. House fires are actually very common. Not all are tragic but some are. We are not even close to being prepared.

We're taking steps to change this. A sweet foldable ladder is on its way in the mail and three fire extinguishers are also in route. We've discussed a few options for escaping but still need to finalize and probably write it down so we can review every once in awhile.

I encourage everyone to take a good hard look at their safety plans and tools, especially if you have children. Just because you know doesn't mean they know or have been taught how. Practice. Practice. 

Be safe and have a plan!


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