Saturday, December 31, 2011

Ah..... 2011

I am one of those make a list of the wonderful things and make a new list of all the wonderful things to accomplish on the 31st of each year. I know... I know.

This year, 2011, however has been a difficult one on levels that I NEVER thought I would face. Most of the hardship has not been directly CF related but side affects of CF. You know little things like, having to face a short sale or foreclosure as medical bills were pilling up, re-thinking my career and beginning the writing of a book, receiving a letter from Social Security that I owe $35,000.00 in overpayment of benefits, and much more personal family stuff.

All of this taught me so much. It has made me realize how strong my marriage is, how strong my faith and how strong I am while simultaneously teaching me how much more it can and will grow.

I want to sincerely show my gratude for all who have followed my journey over the past year. All who have shared in my sorrow, joy and life-changing challenges. I have been humbled by your support.

God has brought me to 2012 therefore He will bring me through it, no matter what obstacles arise!

Happy New Year!


Wednesday, December 14, 2011

The perfect Christmas gift!

Have you ever seen someone hurt from the inside out or even the outside in? Have you ever wished you could do something anything to ease their pain or suffering? What if I told you that you could ease the outside pain which would ease the inside pain by donating a few dollars, would you do it? Really....think about it.....

It isn't often that we can do something to help right now. Most anguish is deeper than skin. Here is an opportunity to help right now in real life. While you will not be solving all their problems you will be helping to ease their pain both inward and outwardly. Really...... think about it.......

This would also make a wonderful Christmas gift for someone who has everything or even as a family.

I want surgeries for Christmas

For more information about the organization written about in "I want surgeries for Christmas" visit Dr. Hodes website


Friday, December 2, 2011

Poking Away at Perfection

Today marks exactly one week since I have started incorporating the new insulin into my routine and I have to say I am doing okay with it. Not perfect but okay. If you missed what's going on, click here, for the backstory.

The new insulin is very quick acting, which is something I am not used to and that has been an adjustment. I started off giving the insulin based on what I was going to prepare, then preparing said meal, only to end up with low blood in the middle of my meal, which if you have or know someone with diabetes you know that it can cause you to eat more because of the way low blood sugar makes you feel. This low blood sugar over-eating causes a spike in blood sugar because you ate more than you anticipated and didn't give enough insulin to cover the additional intake. See the viscous cycle here?

I quickly figured out to make my meal and just before I put the food in my mouth to give the insulin. This method works beautifully if I am home or in an environment I feel secure in. However, if I am not secure or at a restaurant, driving while snacking, immersed in work/school studies, etc I completely forget all together. I am really trying to figure out different ways to "remind" myself to test my blood sugar and then take the insulin based on what I am going eat. Practice makes perfect, right?!

My biggest reward is that my blood sugars ARE starting to be controlled. I am having less really high readings and am starting to feel better. I have more energy, feeling less sluggish after meals and way less moody. I knew I wasn't going to have this perfected immediately and have given my self grace about it. If I didn't I would feel like a failure becoming frustrated resulting in giving up. I have also recognized that no matter how perfect of a routine I follow it might not be enough, our bodies chemistry is at times unpredictable, all I can do is do my best!

If you're new to CFRD or diabetes, don't give up. Continue to work with your care team to figure out what is right for you. You'll feel so much better.

I will continue to poke away at getting this diabetes thing under control and mingled into my lifestyle.


Monday, November 28, 2011

CF, Children, Adoption... Oh My!

As a CF'er who is married and has been contemplating raising children with my spouse I know exactly how it feels to be judged on whether we are fit to parent based on health. However, I seem to have a lot of "conditions" for parents with CF. Things like, what's their individual prognosis, are they pre or post transplant, how stable is the marital relationship, what's their financial situation, etc...etc...etc.. Maybe this stems from working with adoptive parents and knowing what scrutiny they go thru and thinking that maybe those with terminal diseases should go thru the same sort of thought process. But then when I take a step back to really think the issue thru I become appalled to think that my God given right to parent/mother is with conditions of my physical being rather than on my ability to love, nurture, discipline, tend to and teach.

There is much debate in the CF realm about whether a CF'er should raise children regardless of how they enter a family. To be completely honest, I have questioned this myself. Particularly with adoption. An adopted child has already experienced so much loss in their small lifetime that subjecting them to the possibility, a high possibility I might add, that they'll experience another devastating loss is very unsettling to me. With a biological child the loss is still just as devastating but without all the background baggage/loss. This compounded with things like, is the CF'er married or are they single and attempting to raise a child alone and battle CF, what type of support system do they have in place.

There is little to no information out there about having CF and having children. I mean z.e.r.o. I feel like those who have braved the storm have so much to teach those of us who really need some answers or at least a road map of sorts on how to find information.

How does one decide? What if we choose adoption and are never chosen or are declined due to my health. What if we become pregnant and shortly after I pass away leaving my husband devastated by loss with a new baby to raise? What if... what if....

Is anyone guaranteed a specific amount of time?

Normally, I would brush of all the 'what if'ing' and make my decision but this decision is huge. It affects not just two adults who can rationalize but also a potential child. A innocent child, who had no choice in the matter.

B and I said we would give it 5 years of marriage before we really thought about children. We are here as of Sept. 3rd. We are talking and the more we bring to the table the less we have answers for.  Quite frankly, I don't know if we had all the answers that making this sort of decision would be easy because of how much unkown is really there. We'll never know the exact day/time of my passing until it happens, we don't know if a cure will be found in my lifetime, we don't know what medical advancements will come about that could make CF equivalent to asthma. The list goes on and on.......

We want to make a decision that is based on the most current information we possibly can and to fully be at peace with our decision. We are having genetic testing done to fully understand that aspect. I have done a few medical tests to understand how my body would handle pregnancy. Should we decided to forgo attempting to have children biologically we have found that domestic adoption is really our only route due all the requirement of international adoption and medical. Which doesn't turn us off to adoption in the least but places an aspect I am not familiar with which brings feelings of fear, having a birth mother pick which family their child goes to is really hard for me to swallow, it terrifies me that they might look over us because of the CF (after we have paid thousands).

Or, do we pray for peace in knowing that the two of us is enough.

Any insight is welcomed, whether you have CF or not. 

Friday, November 25, 2011

A Week fo Giving Thanks: Day Six

I have been trying to avoid being thankful for one person as I truly am thankful for so many. However, I can't hold back, I have to give note to a very special someone. My husband.

I am beyond thankful for him. He is the guy I hoped I would find. His qualities are gold standard. I am thankful he choose me and that he saw beyond the frightened-bully exterior. Of all the ridiculous outlandish things I have done I am so thankful I didn't sabotage this relationship.

Thankful for B, for loving me, even in the darkest of dark days.


A Week of Giving Thanks: Day Five

I am thankful for a day that not just allows us to reflect on our lives but to reflect on what we are blessed with. Reflecting is important if moving forward with a fresh foot is the goal. Thanksgiving day gives me the opportunity to do just that; reflect.

This years reflection brought memories of joy and pain. Joy from all the amazing people and experiences I have been blessed with and pain from all the opportunities I have let pass by. My reflections have helped me form a thought for the future; turn pain into purpose.

I am thankful I had a whole-turkey-cooking-afternoon to reflect.


A Week of Giving Thanks: Day Four

I am thankful for love and forgiveness.

Without these two abilities I would be a nasty woman who appears ions older then I truly am. I am, however, a very lucky lady. I have many who send their love to me by way of prayer, thoughts, phone calls, emails, blog posts, social media, and the like. I am so incredibly thankful for this love. There are days when evil slips its way into my brain and heart filling it with despair but with one prayer God forwards me all your love, lifting me up, high enough for a breath of fresh to carry on. Thank you!

Forgiveness is something that I have only recently been able to fully whole-heartily do. Let me tell you, it is so freeing. It has set me free from so much stress, baggage and just peer ugliness. I am so thankful for it. I am thankful it only took me 28 years instead of a lifetime to learn and I am thankful that forgiveness for my wrong-doings is possible. I have been humbled many times by forgiveness.


Tuesday, November 22, 2011

A Week of Giving Thanks: Day Three

Today I want to reflect and show gratitude to my very dear family and friends. So many of you have chosen to walk this journey with me, which at times is heart-wrenching with little promise for a future. I have come to recognize that some of you have been placed in my life for a brief moment, to help me thru something or to learn lesson, while some of you have come to stay a lifetime. Each of you serving a different, unique purpose in my life. I am thankful for that.

Someone once said that we all have different people who we need at different times and stages of our lives, it's recognizing this that is the most difficult. I have come to know those who are my praying companions, those who are my errand runners, those who lead an ear or a shoulder, those who can come and pick up the pieces of my broken heart without judgement, those who can sit faithfully by my bedside, those who bring warm yummy food, those who simply think about me, those whom I can laugh uncontrollably at nothing with. You are all an important detailed part of my life.

Thank you for walking with me. I am grateful for it.


Monday, November 21, 2011

A Week of Giving Thanks: Day Two

I am so very grateful to have been born into the modern day society of America. In America we have so many privileges, access to so much, nice comfy hot water at the turn of a dial, light with the flick of a switch, access to a variety of healthcare options, and for that I am grateful. Had I been born into a less modernized society or into a society that has been ravaged by poverty or has a ridiculously low doctor to patient ratio; I would have died, CF would have overcome me.

I take this gift very seriously and feel that this gift is something I have a responsibility to pay forward. To help those who weren't as fortunate, to help those who so desperately need it to simply live another day, to provide a hope for the future.

Grateful to be an American, even with all our flaws, I still have hope for a future and because of that I can give that same hope to another whose country has even greater flaws than ours.


Sunday, November 20, 2011

A Week of Giving Thanks:Day One

Something I don't write much about is religion, for many reasons, but I am Christian and thus the Holiday season has a very different meaning and purpose than simply to have a holiday for my family and I. This week I wanted to begin reflecting on the amazing things and/or people for which I am most thankful and grateful for. I couldn't start without showing my gratitude and love to God.

God has brought so many wonderful people into my life. God has protected my very life when I should never have been spared. God brought me my amazing husband to walk this journey with. God has allowed me the pleasure of walking side by side with so many great women (you know who you are), women who have taught me many lessons. God has given me wisdom beyong my years. God has shown me great love and showed me how to give love. God made man with the ability to develop ambition and knowledge which has brought about life-saving medications and physicians who work tirelessly so that I (and millions) can live another day. This is not by chance but by the grace of God. God has his hand in all things good.

I am thankful that I know God and that I have a personal relationship with Him.


Wednesday, November 16, 2011

CFRD you're a thorn in my side

As of late my CFRD (Cystic Fibrosis Related Diabetes) has been a real struggle. CFRD is its own class of diabetes and has been a big struggle in my life to maintain since I was 13.

Diabetes in people without CF is known as either Type 1 or Type 2. Type 1 the body can't make insulin, whereas, Type 2 the body lacks normal responses to the insulin and doesn't make enough of it. With CFRD the body can't make or use insulin. Unfortunately, CFRD affects roughly 15% of CFer's. CFRD is also diagnosed and treated very differently than diabetes found in people without CF.

CFRD has some features that are found in both Type 1 and Type 2 diabetes. Just as with Type 1 diabetes the pancreas doesn't make enough insulin, therefore, people with CF have insulin deficiency which is most likely a result of scars in the pancreas because of thick mucus. Some people with CF get diabetes because they are insulin resistant, meaning that the cells in the body don't use insulin the right way so more insulin is needed keep blood sugars managed.

My struggle with it is that I really hate testing my blood sugar levels and giving myself insulin shots. I can take oral medications all day long but this diabetes thing has always been a thorn in my side. When I was first diagnosed at 13 I did take insulin with each meal (or least I was supposed to) but I had a difficult time incorporating that with all my other medications and treatments. So, my physicians found an oral drug that  I could use along with regular exercise. This worked for years, probably because of my level of physical activity. Taking oral pill alone stopped working about 7 years ago for which my physicians placed me on a once a day insulin called Lantus which is a long-acting insulin.

Mind-you, my sweet dear physicians were sort coddling me. What I really needed was some good old insulin with each meal sort of a regime. I sort of had to face that with having my G-tube placed because I need insulin to cover the massive intake while sleeping. I began taking two different insulin's at the start of my feeding tube cycle, then the Lantus in the morning and continued with the oral for meals. Over the past few months it has become apparent that the oral is simply not working. I am now adding yet another insulin that must be done with each meal. That take my insulin tally up to 4 different kinds.

I will find away to incorporate this. I must.


Sunday, November 13, 2011

Rocked the running shoes today......

Ever woken up and made a mental note of all the amazing things your gonna do to become healthier. Buy strictly organic, drink more water than juice or soda in a 12 hour period, take a stroll or run outside to get fresh air, avoid fast-food, etc. Yesterday was just that for me.

I woke up wanting to read 3 chapters in my new book rather than watch TV, I put running clothes on and placed my shoes next to the front door, and had my water bottle full ready to hydrate. I accomplished all but running. So. ridiculous. I made more mental excuses than a child being put to bed. Guilt is what consumed the rest of the evening.

Guilt pushed my butt out the front at 10am this morning with my beagle in tow. I did a run/walk, running for 5 minutes then walking for 2 minutes. When I rounded the corner to our townhouse I felt great. My lungs were opened up, I was coughing up all that nasty junk that nobody wants hanging around. I feel like my legs look super-modelish and my overall self-esteem is rocking today! Why do I put this off?

Thanks to my friend at runsickboyrun for the inspiration this morning. After reading about his wife who just gave birth only a few shorts week ago and is rocking the running shoes already, I knew I could do it. What does she and I have in common, we both run for a better life.

Over the summer I logged 5-10 miles a week, ever since my hospitalization in September I have been so timid to get back on the pavement. It's hard to re-start a workout routine, but once I do it I often wonder how is it I have waited so long to re-start.

Just needed a good dose of self-inflicted guilt and a little inspiration!

Here's to better PFT's next month.


Saturday, November 12, 2011

The Vest

I have decided to film me doing a few of my daily treatments and giving an explanation of what each treatment is. This first video is of me doing the Vest and it turned out much better than I thought. I really didn't think about how much vibration would transfer into the video being that I was holding my cell. phone to film it. You get to "see" first hand what my eyes see during the treatment. As you'll find doing things like reading or even watching TV can be difficult.

Please be kind this is my first video attempt:


Monday, November 7, 2011

Encouragement Anyone?

With my limited experience of running long distance, okay not so long, but I am making great strides in upping my mileage beyond a 5K, I am thinking about how amazing this man must feel. How grateful he must be to have been able to accomplish running the NYC Marathon with CF. This brought me to tears, it gives me hope of what the future can hold. It shows me anything is possible. It encourages me to carry on another day.

Watch this short video.*Warning* you might feel inspired afterwards!!

NYC Marathon Runner w/ CF

Thank you for the encouragement today. Thank you for running for all of us and giving us hope for tomorrow.


Tuesday, November 1, 2011

Waste of time?

When visiting for CF Clinic we see a plethora of folks in many disciplines of medicine. CF clinic is supposed to be a comprehensive approach to care, therefore, we are seen by ALL those who manage our care.

There have been times that I have felt like a visit with a particular discipline or quite frankly the individual, is less than fruitful. For example, years ago I thought that meeting with the dietitian was a complete waste of time. I knew from the 15+ years of doing this that I needed to be consuming about 3500 calories a day. Our meetings would be about 5 minutes long. Until, I faced needing a feeding tube.

A little background might be helpful. I really enjoy chatting so I really liked the visit with the dietitian from a chatters perspective but I earnestly thought I knew it all and was managing my weight and/or nutritional needs just fine. I was also young and immature, which are huge contributing factors to my know-it-all attitude. Something more deceptive fueled that attitude. The thought that since I have sort of always been drawn to healthy options and a pallet for healthy fats, grains, proteins, etc nutritionally I was golden. I, like, most have a few things that are my guilty pleasures, Dr. Pepper and frozen corn dogs are a few. I added supplements to meals in the form of Ensure or Instant Breakfast shakes or fat soluble powders as often as possible. I honestly felt that there really wasn't anything more I could possibly add to my routine.

As I have matured and have become honest with myself I came to realize that I wasn't being 100% compliant with adding the supplements regularly but rather I was more wishy-washy adding it only when I remember or could stomach it. Truth of the matter was that after years of drinking the limited three flavors it became a chore to get the stuff down or at times down-right disgusting all together. I wasn't consuming the recommended amount of calories for various reasons. I would get too busy to eat or to plan a proper high caloric meal. I found it expensive to eat so much coupled with all the other expenses of maintaining my CF routines. This became apparent and I could no longer hide; the scale, the blood work, the bone density tests all spoke what I was afraid to admit. CF is hard to maintain particularly when your trying to find your way in life. When attempting to juggle all the 'regular' happenings life like college, social calendars, jobs, etc, etc.... crept in leaving little room to focus on nutrition. This was my truth. What's yours?

However, lying post-feeding tube surgery unable to cough or laugh because it hurt so bad, having to change my intimate time with my husband because I now had to accomodate a tube attached to me during the night and having to adjust what I wore because a new thing now protruded off my stomach changed my entire perspective. Funny how a crisis will do that. I wish my change had come proactively, before needing a feeding tube, I wish I would have put more effort into being 100% complaint and 100% honest but I didn't. Now I have to make the most of where I am. Meeting with the dietitian took on a whole new meaning. 

I no longer see the meeting with my dietitian (or any one no matter what my current state of health is) as a waste of time but rather an opportunity to learn new techniques, become up-to-date on what others are doing, leaning about what is working for others. Asking questions about different ways to make it most effective and efficient for me and my schedule. Finding new cheaper just as effective ways to meet my nutritional needs. Being honest with where I am and asking for assistance in making this work for me.

I encourage all patients and parents of patients to communicate honestly with your care team. They are there to help make managing this disease easier. If something is not working or you feel its unrealistic for you, then be honest with that. If paying for things is affecting your ability to be complaint, state that. They should be equipping you with resources or helping find resources within their discipline to assist you.

There is a reason that certain disciplines are included in our comprehensive care. It's not a waste of time. You get to choose to make the most of the opportunity. I encourage you to do so.

As a side note, I feel great now that I am adhering to the plan that my care team and I have collaborated together on to meet my needs and my lifestyle.


Friday, October 21, 2011

What's with the name?

It has been brought to my attention that many of you don't know why I sign off here with Doodlin'.  Today I unravel the mystery.....

As a little girl who came from a family who worked hard but had little money I spent lots of time of my Nana, my mom's mother, as her babysitting service was free of charge. My younger brother and I spent countless days and nights with Nana and Papa as children. They had a small piece of property that housed dogs, chickens, pigs, and horses. My brother and I loved to play outside in the pasture, chasing whatever we could. We made all sorts of fun things on the property with our tricycles and wagons. I even convinced my brother to touch the electric fence, I made him believe it was fun....mwhahahaha :)

Being that we spent so much time with them meant that they had lots of time to come up with ridiculous nicknames. The one that stuck on me was one that is still used between Nana and myself. You see, when staying with Nana and Papa, Nana would sing (yes, sing) a morning tune upon our awakening that some how included our name. For me it went a little something like....

Kari Doodlin' Dollarhyde woke up one morning feeling fine............

After that first line she would change the rest of the chorus to include what might be happening that morning or what had happened the evening before. The best part of the song was that we got to sit on her lap while she rocked us. Nana is not a stick lady, Nana has meat on her bones and I loved that. I love that I could curl up in her lap and be surrounded by her. I felt safe there. I still feel safe there even at 29 yrs. I have a time or two in my adult years needed her lap to escape the world's and CF's cruelty.

There is truly no love like a grandmother's love. Thanks for the many hours of rocking Nana. I love you!


Monday, October 17, 2011

What I Wish People Knew About CF

I am a member of Cystic Fibrosis forum that strives to bring a sense of community, realness and positive thinking to those of us with CF and our beloved love ones. A while back the question of what we wished people without CF know about CF or could understand better was proposed. At first I had a laundry list of points and thoughts but then I withdrew from the question entirely thinking it was too complicated to even begin to answer.

As time has gone on that question keeps coming to mind. It flares up when I think that someone should know what I am talking about and not look at me like I'm the idiot. Which neither of us are, I just think there is so much and too few words. I feel like it will never really be understood by those without CF, but that they'll only be able to related thru compassion, empathy and love.

We all know what its like to experience a cold, many know what its like to have a daily routine of medications, many know what is like to face a doctor who gives you statistics on how long you have to live, many know what is like to walk thru life being imperfect in pain with no cure and many know what its like to face astounding medical bills. But to know what its like to have CF, is like trying to know what its like to be another person all together.

I want to be able to education my readers, friends, family and the entire world. I want to give you something that your brain can rap around. I want to paint a picture without making it look hopeless but even that is a daunting task that I think only a lifetime of educating oneself on CF will accomplish.

But I can try to pin point a few things I and other CF'ers wished people could understand better......

  • Minor colds, or illness's could be life threatening and please take me seriously when I ask to be notified that your feeling "under the weather" so that I can bow out.
  • That not all CF'ers are the same. CF affects each person differently and manifests itself differently from patient to patient. We are not cookie cutters. We are unique cookies, some of us have 3 chocolate chips while some end up with none.
  • Taking care of myself is a full-time job with no pay, no benefits and no prospect at future employment. No joke. But most of us have to really seek employment to pay for our medical bills and fear losing SSI/SSDI if we are gainfully employed. So, really, we have two full-time jobs. 
  • Our life expectancy isn't 16 anymore. We have fought hard and we have pushed that number up into the mid to late 30's!!!
  • CF is our WHOLE life. We don't get better, we never go into remission and we never get a break. EVER. If we do its because we have died.
  • We pass gas and can't help it. Many CF'ers are plagued with having to take enzymes to digest food which can't break down the fats and causes massive stomach pain. We are sorry for this and we know its very unpleasant for all who happen to be around. Sorry a billion times over.
  • Wish it was viewed as a "lifestyle" disease instead of a lung disease. Because CF is not a lung disease it's a disease of the cells and it affects far more than just our lungs.
  • We struggle tirelessly to gain weight. Many of us have G-tubes to get extra calories. We hate hearing that you would trade being heavy or needing to lose a few pounds for CF. Take my word, you would not.
  • Just because I have CF doesn't mean my offspring will have it too.

With all that being said, please join the conversation. What would you like to know about CF. What things have you thought "I wonder why, how, when.........." The above is simply from mine and others with CF's prospective based on what people have said to us, asked us and non-verbally communicated to us.

Just curious about what's floating around in your head!


Sunday, October 16, 2011

Awareness Opportunity

Anyone remember that old American sport called Baseball? Baseball used to be a staple on the radio and later on tv in most homes around the US. Many still enjoy a ball game in their pass-time while others still have a die hard obsession with it.

Whether your a die hard fan or are just a person who glances at the final scores every once in awhile the CF community could use your help.

Ken Rosenthal of Fox Sport Baseball could be wearing a 65 rose's bow tie to bring awareness to Cystic Fibrosis. Please follow the link below to "like" the photo of what the 65 rose's bow tie will look like. You can only vote once, so please pass this on to your friends for a chance to vote too!

Maybe you could host a game day party and get to know baseball again and to find out if the 65 rose's bow tie made it on the big screen.


Thanks for helping to bring CF into the spot light. Helping make CF stand for Cure Found!


Sunday, October 9, 2011

My Shoulders Can Hold No More

I use this blog as a way to get thoughts out of my head that may be something other's can use as they walk the maze of life with a terminal illness. Most of  All of the writings are about me, whats happening with me, how much I am suffering or how great something in my life is or was. Tonight my shoulders can hold no more. I must unload my burden and ask for help.

Today, I am over come with grief. My grief is not about me its about all the children suffering in our world. In our backyards, yet so many of us just sit by the side lines and do nothing. So many children suffer so we can have. So. Many. Children.

I came across information about child labor and chocolate while surfing facebook, I have heard this before but like millions of other self-induglent individuals I brushed it off. Well, today I felt a sharp pain in heart for having brushed it off. I feel guilty that I continued to fuel the monster. Today I take a stand to stop this ridiculous suffering. Seriously! Today I researched what chocolate to buy and found a nice list at Stop Chocolate Slavery.

After I had committed to buying only child-labor free goodies I was once again smacked in the face with starking realties of the extent of suffering children go thru. Invisible Children made a powerful video:

25 Recap Video from INVISIBLE CHILDREN on Vimeo.

After watching this I had tears running down my face. I am not just talking about children in far away lands but look in our backyard. Child Welfare does a nice job giving us a plethora of information about US orphans.

I know I alone can't change the world but I can start a movement. I can help be a voice to those who don't have one or rather must suppress their voice.

I know that you can't change the world alone but you can do SOMETHING. Whether it's being cautious of the products you purchase, being silent for 25 hours, become a foster parent, or simply write a blog post for billions to see. YOU and I can do SOMETHING. Will you take a stand with me?

The children of the world's shoulders can hold no more.........


Wednesday, October 5, 2011

Notice of Continuing Disability Review

I have over the years felt like the disability benefits topic has largely been swept under the rug. Doctors and financial advisors don't talk about it, patients don't talk about it, parents of patients don't talk about it. Maybe they do and I am just missing the conversation but seriously even when I have been struggling to pay for medications and/or treatments no one brings it up as a possibility. The only reason I know about it is because my mother collected SSI for me after my dad passed away when I was 15. Essentially it is drawing his Social Security benefits for the support of his disabled child (me). Our case worker at DHS helped my mom through the benefits maze and found that it might be possible for me to collect disability upon turning 18.

Well, I being a stubborn soul didn't think that was necessary and that I could work just as hard and just as long as the next person. WRONG. After lots of missed time from work and needing supplemental health insurance we looked in to it again when I was 20. In 2001 I was awarded the ability to draw Social Security benefits in the form of disability. This did not come easy. There were attorney's, visits to physicians that Social Security had appointed along with medical data collection from my doctors. My medical file is seriously a room full. In the end Social Security declared Cystic Fibrosis to be a disability that hinders one's ability to support themselves.

I still, after, 8 years of collecting the benefits feel weird about it. In fact, I really don't tell the world (until today) that my income largely comes from the benefits. The biggest reason of having the disability benefits is that it's linked with Medicare and other medical benefits, like hospital coverage. Without the supplements I can't even begin to think about what kind of medical care I would be getting. No joke.

Every so often I get a Notice of Continuing Disability Review in the mail from Social Security. This time they are looking as far back as 2006 to determine if I am still disabled and still eligible to receive the benefits. This process always makes me nervous. I don't know who is reviewing my case, what their credentials are or if they even have any idea what CF is. It would be devastating to loose the benefits. I wish there was some sort of tracking system that could show Social Security what diseases have been cured and what diseases still have a death sentence attached.

I do want to make a point that I don't rely completely on the benefits. I do give back to the benefits pool by working as much as I can when I can. Not that I owe anyone an explanation, I mean, I wasn't in an accident caused by my drinking driving leaving me disabled. I have no control over it, I had no say nor did my parents at that time.

Furthermore, if your a cyster or fibro or parent to one you might want to look into your state's Social Security benefits programs. They were created for a reason. There is no shame. Shame should be placed on the pharmaceuticals companies banking millions off drugs you need to stay alive, shame should be placed on insurance companies for turning patients away when they need life-saving treatments or surgeries.

Notice of Continuing Disability Review is still pending........


Friday, September 23, 2011

Release and Home Healthcare

As Saturday came and went I continued to improve and regain strength. One thing that happened was that my red and white blood cell count dropped to a concerning low. They believe it was another affect of the Zosyn allergy but couldn't be certain so retesting had to be done on Sunday and my going home hinged  on what the tests revealed. Early Sunday morning another blood draw was taken to the lab while B and I waited to see if I could go home.

Going home would entail continuing my IV therapy under the supervision of Home Healthcare. This is a benefit that is provided to me thru my Social Security benefits, thank goodness at very little cost to our family.  The HH nurses come out to 'teach' the proper techniques for infusing all my medications as well as to ensure proper sterilization is being done. There are many infections that can occur when having a Picc Line and not following all the necessary precautions. Things like hand washing, drying hands with paper towels instead of dish cloth, cleaning the Picc Line cap with alcohol prep pads for 30 seconds, etc.

Around 1pm the test results had come back with no change. The cell counts were still down and the doctor gave us our options and what each could possibly mean for us. One option was to go home, repeat the blood work on Monday and depending on those results re-admittance maybe needed. Should I be re-admitted I would be looking at having injections to boost my bodies ability to produce red & white blood cells or worst case scenario a blood transfusion.

B and I decided to go home. If they didn't feel those treatments where needed now then I wanted to go home even if it was for only 24hrs. Upon getting home around 3pm, it was time for my first IV doses at home and as promised my HH nurse arrived just minutes after we did.

We quickly converted my kitchen table into a small IV station and began my training. Since I have been doing HH care since the early 1990's I am pretty secure in my ability to carryout the treatments. However, over time things do change therefore I need to be caught up to speed. The HH nurse was there for about 1hr and would be returning the next day for the blood draw.

IV Station 

My medication schedule is Tobramycin every 24hrs (3pm) and Meropenem every 8hrs (4am, 12pm, 8pm). This is in addition to all my regular treatments. It's a lot to do, its a lot to remember but its completely totally worth it to be home. To eat dinner with B, to get up in the mornings with B before he heads off to work, to just simply be home with my little family is sooooo soooo much better than the hospital.

Tobramycin (tall bottle w/ light blue top) Meropenem (small bottle w/ dark blue top)

These bottles are super cool. Instead of bag of fluid like most people are probably used to seeing, these have a rubber ballon of sorts that is filled with the medication. When it's released the pressure forces the infusion of the medications. I have to say these simple little things make life so easy. I can wear a sweat shirt with a front pocket and no one knows I am hooked up. I can even put them in my pants pocket if the pants are loose enough. This allows for me to do what I want. Go to the grocery store, fold laundry, do yard work..... all because there is no pole needed to elevate the IV bag but rather a pressurized balloon.

Tuesday morning the blood test results came back that showed a small improvement. Yes! The plan was to continue daily blood draws to ensure that things were continuing in the right direction and for me to continue all my medications for a total of 14-days. I have a scheduled doctors visit on Friday 9/23/11to find out if we can stop the IV's or if I need a few extra days on.

Today is the day. I am so hopeful that I can reclaim my kitchen table, I can reclaim my left arm and shower without holding my arm above my head to keep it dry. I am hopeful that today, as my Nana says, my batteries will register as fully charged!


Monday, September 19, 2011

Allergy = Hospitalization Day # Dos

I am happy to announce that hopelessness didn't consume me entirely!

As the night wore on and I realized that I was in for the long haul with no sleep and nothing from home but my cell phone, I decided to utilize my Facebook application. Thank goodness. I put one post about my dilemma out there only to get 29 comments. This may sound ridiculous but it kept me in the game, each time a new comment was posted my phone would ding announcing the news. That ding became a sweet sound of reprieve. I was taken away to FB land to read something that was encouraging and heart-warming. Thank you all.

By about 4am my phone battery had died from all the use and no charger but my CF doctor came in that morning unusually early because of all the patients in different hospitals that he needed to see. I was beyond thankful. During our discussion about the nights events, we both felt that changing the Zosyn to Meropenem was what absolutely needed to happen as it appeared that I had developed an allergy to the Zosyn.

This is not good news. The changing of medicines, yes. The allergy, no. There are only a few medications that Pseudomonas is sensitive to, meaning that can battle the nasty stuff. I now am allergic to  two of those precious medications.

The nurses immediately began to infuse the new drug and I slowly started regain normalacy. The vomiting stopped immediately, although I was left with no appetite for most of day. The no appetite thing had nurses a bit on their toes since I need approximately 3500 calories a day. The use of my feeding tube was halted because the hospital didn't have a particular connector tubing that my MIC-key button (g-tube) required thus zero caloric intake for over 12 hours. B would have to bring the proper connector up later that day. I still could not sleep. All the drugs that were given to help ease each symptom left me in a haze. I would close my eyes, toss and turn, fluff my pillows but sleep would allude me each time. My mom came up sometime in the day light hours of the morning, she came in tow with a bag that B had packed me of all the stuff I wanted from home. In my exhaustion I really wanted nothing to do with most of it besides the phone charger so that I could update my dear and loyal FB friends as well as return the 20+ text messages. My mom stayed the entire day, she simply sat played on her new iPad toy by my bed as I desperately tried to sleep. We would spark a conversation here and there but not much. I really really really wanted to sleep. That's what mom's do, they sit by your side with no expectations to be entertained.

Sleep is a very allusive function while in the hospital under the best of circumstances. In the hospital that I am typically admitted to they do 'purposeful hourly rounding' as the sign in my room to eloquently read. The nurses and/or CNA's came in every hour to take vital signs (temp., blood pressure, O2 stats) in addition to entering to administer my IV drugs, oral medications, etc. The traffic to my room was ridiculous but understandable.

Later in the evening I had a few visitors. My brother came with his two kiddos and my hubby came to stay the night. By this time I was starting to regain some strength, enough so to make a few trips to the bathroom alone and I even ate a light dinner. As night time approached I asked if I could have 4 hours of uninterrupted sleep. My night nurses were very much in favor of this. It was not the best sleep I have ever had but compared to the previous nights events it was bliss.

Thursday, 9/8/11, began with a routine admittance and was worsened by an allergy. By Friday evening I was back to the status I had been admitted for. Hoping that Saturday would show improvement and we could start to look a release date. The one thing I was worried about prior to admittance, the Picc Line, was the only thing working.

Yay, Picc Line!

Thank you everyone for all your kind words. Sometimes we don't realize the full effect of our actions and/or words. Yours helped me get thru the night, gave me the strength to not break down in tears and to not let the feeling of hopelessness consume me. I have a new respect for social media. We don't know what post will make someone laugh or cry or renew their courage.


Friday, September 16, 2011

Pulmonary Hemoptysis= Hospitalization Day # Uno

Oh, the joys of the unexpected.

Last Thursday (9/8/11) I was caring out my morning rituals as normal. Which begins by taking long list of medications, eating breakfast, getting dressed and lastly taking the dogs outside. It was a nice morning and so I decided to hang out with the dogs in the backyard to get some fresh air. During that time I had a coughing episode, which is not unusual, that produced bloody mucus. As I kept coughing and spitting. Which is highly encouraged to get the mucus up and out of the lungs, more blood than mucus started to show up. This at first was not alarming as coughing for great lengthens at a time and with great veracity can cause a few broken blood vessels. In the amount of 2 hours I had coughed up a lot of blood and began to become very concerned. Concerned enough to place a call to my doctor.

My first level of response is always to call my doctor to find out if they feel going to urgent care or the ER is necessary. Typically, a trip to either is fruitless as they really don't know how to treat such a complicated disease unless its immediately life-threatening. After a few discussions, Dr. Cohen recommended coming into his clinic to be seen.

I immediately rushed out the door to make the 45 minutes drive to his office. Upon arrival he had a preliminary diagnoses of Pulmonary Hemoptysis, which was only further confirmed after his physical evaluation. There a different levels of Pulmonary Hemoptysis, which are characterized by the amount of blood being brought up and the circumstances surrounding the current health of the patient. In my case, Dr. Cohen felt that antibiotics were necessary and since I had literally just gotten off an oral 14-day prescription of Cipro, a stay in the hospital was warranted. Ugh!

Honestly, I was not surprised. My biggest concern was that I hadn't packed anything prior to rushing out the door. You see, I have a particular set of things that always accompany me to the hospital. Books, pillow, blanket, my own pj's, sports bra (this helps when male nurses/doctors have to evaluate the lungs and with modesty), Bible and my UGG boots for walking around the halls. Nurses always get a kick out of my room, as I make it as homey as possible. I was worried about getting all this stuff. Silly, yes, but it helps ease anxieties making me comfortable when I am alone and is my saving grace during difficult times. I immediately called the hubbs to begin arranging the logistics of my stay. Hubbs works for his parents for which I am grateful. Is step-dad was able fill-in for him for the remaining part of the work day so that he could accompany during the check-in process.

B and I checked in to the hospital about 1pm. Check-in can be the worst part of the entire stay. I had to have a Picc Line placed, x-rays, blood work, etc...... I hate Picc Lines. They freak me out. I have to have to take anxiety medication for it or I cry uncontrollably during the procedure. It's really all psychological as they do a great job in numbing the area and I feel no pain. Once they have the line placed they immediately begin infusing two different anitibiotics. The first was Zosyn and the second is Tobramycin to treat Pseudomonas which are the underlying cause of the Hemoptysis.

Picc Line preparations-anyone recognize what t-shirt I am wearing?

At first dosing of each antibiotic things appeared to be going smoothly. I was a bit tired but other than that I felt pretty good. B and I decided it was safe for him to return home to get a good nights sleep and to pack me some comforts for home. My mother was going to take Friday off to be with me so that B could finish out the work week (we need the $$$, sadly). B left around 8pm to make the 1hr trek home. I fell asleep and awoke around 11pm and would not sleep again for 24hrs.

When I woke I was shivering had a fever and my body hurt. The nurses pilled on about 3 or 4 warm blankets and gave me Tylenol. The Tylenol had no affect and shortly after I began vomiting. My joints began to swell and the on-call doctor probably had no idea what to do for me. They gave me Vicodin for the pain and anti-naseau med's thru my Picc line, all in addition to my continued antibiotic regimen. The best description I can give and did give was that I felt like I was being poisoned.

The battle continued all night. All night I was shivering uncontrollably causing my muscles to ache my joints to become swollen and painful. I was sweating from the fever and I was alone! I had no comforts of home since I didn't have a chance to pack and it was in the middle of night.

Hopelessness threatened me.....


Tuesday, August 23, 2011

An Understanding

When a person is sick the first reaction of those who love the person in question is to surround them with love and support. This is a normal and very welcomed in the mist of crisis.

However, there is a fine line between getting support you need and becoming a drain on those you love. My husband would tell you that I don't ask for help enough and that I walk myself into hot water at times. I have to admit I have a lot of pride. I am the last to admit I need to go see that doctor and my dear hubby is the first! The other day he kindly remarked that he thought it was time for me to visit my doctor and my response was that I thought he needed to shut his mouth. Gasp...... I have since apologized and seen the doctor. The thing that I love about my hubby is that he notices the slightest change in me. He can detect my mood changes, which is often a reflection of fluctuations in blood sugar as well as an infection brewing. He and I have an understanding (which is not always perfect because we are imperfect) I will do as much as I can when I can and I will ask for help when I can't, he will do what he can when he can and together we'll fill in the blanks of daily life together.

The opposite is also true of some patients, they ask for too much help. I am not trying to be cold-hearted, this is a reality that is often overlooked because they are sick. I and medical professionals can tell you that if a person can do and it is deemed safe, its best that the patient does it. Being able to take care of yourself is such a freeing experience that builds confidence and usually leads to better overall health. We are people outside of our disease and we need to find a level of confidence, self-worth, and independence. Not everything is our disease. Sometimes laziness is simply that. Sometimes we find ourselves in a cycle of self-pity. We need caregivers who can recognize these whom we have an understanding with. The understanding being that we need their support at times but other times we need to be able to rely on our selves and give support in return. 

I hate the thought of causing those in my life to become burnt out on caring for me. Plus its important to me that I understand that they have difficulties in their lives as well. I hope I always retain the ability to look outside my own suffering with a gauge of perspective and know when mine is bearable and know when I should seek medical attention.

I can't say enough about my hubby. I can't even begin to spell out all the wonderful support he provides. It is not something that can really be verbalized only observed. I think anyone who has watch B and I can attest to his amazing patience, love, support, heart and overall magnificent self. He is my balance in so many ways. 

For all you endearing partners of chronically ill spouses you deserve a huge pat on the back and a giant hug. Choosing to love someone is hard enough but when you love us when we can't always control our emotions or physical state is such an act of pure honest love. Thank you!


Friday, August 19, 2011

Helping leads to relief, relief leads peace

I am thankful for being able to do things in my life that I am passionate about. Many who know me closely know that I have a few things that strike a fire under my feet and push me to help. Besides fighting for a cure for CF I am also a crusader and deeply passionate about the tremendous suffering of children in impoverish countries like Ethiopia. Let me give you a bit of background......

In 2006 I was searching for a part-time job to help supplement our income. I have had many jobs in my little lifetime and knew from experience that I wanted to work in a non-profit that makes a difference in someones life. I began my search on Craigslist and found a job opening working at an international adoption agency. I had no idea what I was getting into but I applied and got the job.

I loved my job. I loved that I made a difference, no matter how small. I was able to ease the suffering of a handle full of children by assisting their placement into forever families. By doing so, I was able to look outside my suffering and see others. I also developed some very close relationships to wonderful people and families.

What I learned ripped my heart to shreds.

During my employment with the agency I had the amazing opportunity to travel to Ethiopia for 14 days. I wrote a daily journal about my feelings towards what I saw, heard, tasted and smelled (which was little since my sniffer doesn't work well). I traveled in March of 2009 and to this day have a difficult time reading the words I wrote. At times I feel like I made it all up. How, can the suffering be so tremendous when I have SO much, when we in the US along with other industrialized nations have SO SO SO SO much.

My friend over at scooping it up, who along with her hubby had the same opportunity to travel to Ethiopia as I, wrote is so well. The devastation in Somalia and other countries like Ethiopia is consuming. It can rip you to pieces. To be honest, it should, I should feel saddened by it, I should feel anger about it, I should feel compelled to help, I should stand up and take a stand to assist in their relief.

If for no other reason but to make your selfish soul feel better, help aid the relief. I did.


Tuesday, August 16, 2011

CF Clinic

Different hospitals and/or doctors offices that are registered CF Care Centers thru the CF Foundation host what is commonly know as CF Clinic. CF Clinic is a specified day that patients see all the necessary doctors or caregivers that are pertinent in treating CF. The most common grouping of doctors is a doctor who's speciality is CF along with a dietitian, respiratory therapists, social worker and/or counselor. Patients see all the above at different times thru out the year but every month or 3-months patients can see them all under one roof.

This can be intimidating. It's typically a much longer appointment; 1 to 3 hours, and it's a lot of information in one sitting. For me, I LOVE CF Clinic. I am a busy person and to be able to see everyone in one big swoop is super duper convenient for me. But besides the convenience factor, how awesome is it that we get to have all our doctors/nurses/therapists (caregivers) in the same place at the same time to collaborate care. Problems are typically solved or at least a game plan is developed so much faster this way. All the caregivers are on the same page about your care, since they've spoken directly to one another which also allows for a more open dialogue, versus email or by phone or worst yet by me relating the information to each one.

Today was my 3 month CF Clinic. My appointment was at 1pm. I always get nervous during the drive because even though I might feel good, the numbers from different evaluation tools don't lie and reflect a decline. I know it seems silly to think that if I feel good then the numbers should reflect that, but the truth is that we sort of become accustom to feeling a certain way after awhile, therefore, a light cough might not be noticeable to the patient as they have become complacent but the PFT's (pulmonary function test) could show that infact the lung function has dropped slightly. The entire objective of having CF Clinic at regular intervals is so that small changes can be adjusted for before things get out of hand or worst does damage for which the patient can no longer regain lost ground.

When we CFer's check in for clinic we are almost immediately taken to our examination room. The less time we spend in the lobby with sick patients the better. The logistics for how each clinic is ran varies. At  my clinic which happens to be with Kaiser Permanente in Portland, Or. each patient is assigned a room and will return to the room for the duration of the appointment. So, if I go to x-ray or the lab, I would return to the same room. This is for sterilization reasons. Here is the entrance to my room today....

As you can see, each caregiver check's off if they have seen me or not. This helps the flow as caregivers move from patient to patient. My first stop after checking into my room was with 'Respiratory'.

Our clinic always tries to have the patients go to respiratory first so that a base line of health can be established for this appointment. What happens is we use a device called a Spirometry that is attached by cable to a computer to measure our PFT's (pulmonary functions test) because CF is predominately a lung disease this helps the caregivers to know what sort of direction your health is going; stable, decrease, increase. For me, my PFT's have sort of leveled off or have been in the same range for a few years now. This is both good and not so good. We never want to become complacent we always want to find ways to improve the health of my lungs. Today's numbers after doing the PFT's were a bit low, which I was not 100% shocked about. I have been feeling a bit more fatigue than usual, I have a bit more of a cough when I lay flat to go to sleep and upon waking in the morning.

A little snap shot of what the device I blow in looks like for PFT's

I love the hot pink nose pinchers! Got look good when doing these sorts of tests, right?! Let me be clear these tests are not easy, you have to take a BIG BIG breathe in and release it as quickly as possible then in the same breathe continue to push as much air as you possibly can muster. For many CFer's this induces long bouts of coughing, the kind that makes your abs hurt.

The results from my PFT's are given to the physician who will be seeing next. I then go back to my assigned room (which happened to be right next door to this room).

This is where we talk about my weight and how my feeding tube feedings are going. With the guidance of a dietitian we can make any needed adjustments. We also talk about my diabetes because that plays a significant role in my ability to gain weight. No, I am NOT on a special diabetic diet, I would look like a walking skeleton. I am on a very high caloric diet. For example; I used to do my feeding tube 5 nights a week but I have since decreased the number of nights to 3 and have maintained my weight for over six months on the 3 nights only!

This is such an important component to overall health when battling a terminal illness. We chat about all things that are going on in my life as well as how I feel I am doing in my journey with CF. I personally have and still battle with episodes of depression. In working with my social worker we have a game plan along with anti-depressents. We also talk about positive things that I can do in order to enjoy each day more. For example, sit outside for 10 minutes just taking in slow deep breathes. It's amazing how fresh air and quietness can rejuvenate a soul.

This piece I believe is fundamental.

So, the doctor is typically the last person we see. The doctor consults with everyone before seeing the patient or many times they all talk together along with me. The doctor allows me to ask any questions about any of the test results or to bring up other concerns that I feel need to be addressed. I also talk with my doctor about my diabetes because he also specializes in Endocrinology. Then my doctor and I (yes, I) talk about what we can do to facilitate the best care. I truly love that my medical team values my input. They work from a philosophy that the patient must be educated about their care, willing to carry out their care plan and able (physical, financial, etc) to carry out the care plan. If one of those pieces is missing then it won't work.

I am on a 14 day round of Cipro for a sinus infection and we are adding another nebulizer treatment to help boost my PFT's back up. So I am taking it easy for the next 2 days or so while the Cipro works on fighting my pseudomonas and try to fit another neb treatment into my daily routine.

But because I am such a good patient and for all the times I didn't get any treats because they were chocolate I got a huge bag of my favorite bit size yummy's.

I left CF Clinic at 3:55pm! Phew. So I hope the mystery around what happens at CF Clinic is no longer such. Please ask me any question that comes to your mind, if you are thinking it I am sure others are too!


Thursday, August 11, 2011

Patient to caregiver and back again

As I grow older so do those around me and I am finding myself in quit a pickle. I have never been a caregiver. I am not a mother, I have never had to oversee care for a chronically ill parent or grandparent. I have always been the patient or the one receiving the care. My pickle is that I want to be the best caregiver I can be when and if the time arises yet I have little to no experience.

I have had some incredible caregivers. I am still lucky enough to have my mother and grandmother as two of the best caregivers in the world, if I don't say so myself! I have also had many outstanding nurses and doctors who have spend countless hours assisting.

From my perspective being a caregiver is at times is harder than being a patient. Caregivers are helpless most of the time, while the patient (if able) can make decisions about their health care to treat or ease the side affects of the illness. Caregivers are so crucial to the over-all well being of a patient, simply because of the non-medical support they provide.

In my case, my caregivers have all help in different ways, each caregiver has a different set of strengths and skills. For example, my Nana (grandmother) set of skills and strengths was to comfort. She would always come visit with yummy food that warms the insides and with a tender hug, kiss and even a lovely little song. Yes, a song! Nana would stay by my side even if I was sleeping, I can't even begin to verbalize how comforting waking up to a familiar face is in the mist of being ill. While my mom's strength was in directing traffic of sorts. She would make sure that I had what I needed when I needed it. She also dealt with the doctors, getting prescriptions, making sure I took all my medications and making sure things ran as smoothly as possible for me. She too would be there upon my waking  but often times she alot of hats to wear, like parenting my younger brother and ensuring all his needs were being met. Mom's of multiple children with whom one is ill are some of the strongest, bravest, determined and fierce woman out there, no joke.

About 4 years ago my mom was diagnosed with Thyroid cancer. The treatment was to remove the entire Thyroid and any surrounding glands if needed along with some oral medications of sorts. I had in my mind that I would walk every step of the way with her as she navigated the ruff waters. I went to a few doctors appointments and was there when she had the surgery. But I quickly realized that it is really difficult to make the transition from patient to caregiver. I have never had to care for my mom or assist her in making major medical decisions besides going for routine check-ups. I truly felt lost and had no idea how to help her or what to say to comfort her. I also think it was hard for my mom to transition from caregiver to patient. We as humans become so accustom to doing and managing things a certain way which makes change or transition difficult.

I pray I never have to become a caregiver to my mom or Nana or anyone I love but history along with time tells me that they are aging. While there is no way to anticipate the kind of care they will need or want I can begin to attempt to understand what makes a great caregiver and mentally try to become just as great a caregiver to them as they have been for me. I owe them that at the very very least.

I must learn to become a caregiver from the experiences of being a patient.


Wednesday, July 27, 2011


It's funny, okay, not funny but seriously dangerous how many times I have to learn a lesson before the lesson learned sinks in. I have been diabetic since I was 13 yrs old so I have had enough years experience to know that I should NEVER guess my glucose (blood sugar) levels. My guess-o-meter is critically flawed compared to my fancy One Touch meter, that was made for such testing.

The other night I had a ravenous appetite and consumed a good healthy amount of snack food. Not nutritionally good food but straight-up junk, like sugary cereal. I had tested before the consumption began but thought I knew best by making the decision to not test again after the eating binge began.

About an hour later B and I were talking and apparently I had a bit of a bad attitude causing him to ask me if I was upset. This should have been trigger #1 to test my blood sugar. I either was already too far gone in my high-blood-sugar-coma or really just didn't think about it. I truly believe is was the coma. I replied to B that I wasn't upset, therefore, we began watching a regular show for the night and I fell asleep after 5-10 minutes. Upon watching up I was a bit shocked as to why I was so sleepy, trigger #2, but again did nothing.

It wasn't until I tested again before going to bed did I find out that my blood sugar was 290! That is WAY high and it probably was higher at the peak just prior to me falling asleep. My crankiness and bad attitude didn't wear off until I had my sugars back down to a safer 150.

Man am I stubborn. I am proud to say I am checking more times per day now. I hope I can stay motivated and my fingertips don't fall off.


Tuesday, July 12, 2011

A Word: Compliance

Last night while doing my nebulizer treatments I was thinking about how long it has been since my last IV (intravenous) treatment and how long it has been since my last in-patient hospitalization. I am proud to say that its been a year and a half (November 2009) since my last IV treatment and about 2.5 years (November 2008) since my last hospitalization. Astonishing!

Growing up I spent lots of time in the hospital, usually 2x a year for up to 14 days each visit. Needless to say I grew very accustom to the hospital. I had "hospital" bedding, slippers, pillows, pj's, etc that would go with me to help make the stay more comfortable. This is how you can identify someone who has spent too much time at the hospital, their hospital room looks like their room at home!

By the end of the treatments I was trying to figure out why my health has either gotten better or stabilized or was it a figment of my imagination? My conclusion is complicated but the gist of it is that I have began to understand and appreciate doing my medications.

I have been apart of so much medical advancement and have been lucky enough to be on the receiving end of the advancements. I think that one of the biggest things I have been able to do is mold my life and lifestyle around CF. While this may appear that I am letting CF control me, I am in fact doing the exact opposite. In order to have freedom from a disease you have to treat it. I have to be able to do all my medications and be able to take time out (sick days, rest days, etc) in order to enjoy my life and in order to be a productive employee.  The older I get the more I really understand and appreciate this concept. It used to be that I would put off the treatments in order to go play, go to a movie, watch tv, or whatever. But the truth is that I would feel sick, short of breath, have headache's, have low or high blood sugars that would leave me feeling depleted. When I started to reverse my priorities and take care of myself I could then really engage in whatever activity I was doing. There is a word in the medical field for all this, compliance.

Compliance is always brought up in CF Clinic. Are you being compliant with all the medications and treatments. This word compliance, is like a hammer-to-the-head, for those with a chronic illness. Seriously, I hated having to answer this question in clinic. Because, no matter how much I strive for perfection I will never be able to be 100% compliant 100% of the time. I am human, not God. I am riddled with errors. As I have found a balance, I can honestly talk about compliance in a more realistic way. I am compliant to the best of my ability and I am always looking/seeking for new ways to be more compliant. For example, doing my Vest is an area of difficulty for me because I hate sitting still for 20 minutes with literally nothing to do. The Vest, for those of you who don't know, vibrates the chest area to help the patient cough up the mucus. The vibration is really strong, so much so that I can't read during the treatment, can't hear the TV over the machine, can't really do anything that requires hand-eye coordination.  I put a commitment on Facebook about this dilemma and got lots of great ideas, like books on tape or podcast. PERFECT! Now I have solved the biggest hurdle in my compliance issue with my Vest treatments.

So, do I think my CF has gotten better, no. Has it stabilized, maybe in some ways. Do I think I have found a happy healthy balance, absolutely. I made a promise awhile ago to doing all my medications and I intend on keeping that promise but I also want to build upon that. I want to do them with a happy heart knowing that its my gateway to a smoother path rather than with dread. If you, as my readers think of fun ways to do things like The Vest or nebulizer or feeding tube treatments please let me know. We can all learn together and we can all make improvements together.


Tuesday, July 5, 2011

Starlight Run

In March I embarked on a huge goal; to run a 5K. I trained for 10 weeks. Starting out running 1 mile 3 times a week and adding .25 miles each week until I was able to run the 3 miles.

That sounds easy enough, right? Well, maybe for those of you who have nice pretty pink healthy lunge tissue. For me, my gosh it was a struggle. It's the kinda of struggle that pushed me to do more, to continue on with my goal and most importantly taught me I could do it if I worked hard and prepared enough.

The biggest struggle was coughing while running. I would be sure not to drink lots of water right before I went for a run, but I am telling you as soon as I coughed while running I would not be able to hold my pee. As you can imagine running while the mucus in your lungs is rattling (weezing) causing you to cough uncontrollably and peeing your pants is a ridiculously saddening feeling for a grow adult. However, as I continued to fight thru the embarrasment, pain of burning lungs, sore abs from coughing and of course sore legs from all the running I gained confidence. I also started to not care about peeing pants. Who was going to know? And if they did why did I care what they thought? They don't know me or my situation to appreciate the fact that I was still attempting to reach for the stars. But I did learn to run in black pants rather than bright colors or gray!

On June 4th I ran the 5K Starlight Fun run in Portland Oregon. On June 4th I dug deeper into my mental and physical depths of strength than ever before. On June 4th I crossed the finish line holding my husbands hand and greeted my mom on the other side.


Wednesday, June 29, 2011


This year's birthday was spent just how I wanted; in my pj's watching tv all day long with cheese pizza topped with a sliced tomato for dinner. Perfect.

For years I have been celebrating by going out to dinner to some other sort of event and each year I wonder why I do that to myself. Yes, it's fun. Yes, I enjoy getting all attention for one day. Yes, I love catching up with old friends and family. But.....

Each year gets harder and harder to process emotionally. Each year on or the day before my birthday I feel like my emotions are a mixed bag of nuts. Some emotions are tasty and sweet while others are salty (literally from tears). With each passing year I get closer and closer to the median survival age of 36. I think my gosh, 36 is only 7 years away, I have so much I want to accomplish before then. I feel like the timer for my life is running out on EVERYTHING. I think of what I have accomplished thus far and it simply is not acceptable to me. I want and need to put more footprints in this life. I start to make lists of things I need to do and things I want to do before the next years birthday. I think of sweet things to say to those I love so that I can be sure they know how I felt about them should 7 years go so fast that I forget to say them.

In between frantic thoughts of only having 7 years I think about all the amazing things I have gotten to do. All the great, and I do mean great, people I have encountered in just 29 years. The fact that I spend the last 5 years with a wonderful, caring, intellegent, hardworking, and compassionate husband. I am thankful that I have become an auntie two times over in the past few years. I think fondly on all the trips with all the different people I have been so blessed to travel with and all the people I have met during our travels. The list goes on and on.........

In my attempt to grab the good nuts yesterday I ended up grabing a few unfavorable ones. But the not-so-good-ones help me appreciate the goods ones soooo much more.


Thank you to all my peeps for the wonderful happy birthday wishes.

Wednesday, June 1, 2011

Love thru my diseased teenage eyes

Is love in our teen years really possible? I can pose this question now but in the moments of being 11-to-18 yrs old this question had a definite answer, yes! I sought out to find deep meaningful love from boys, not men or young men but boys. Of course that’s not how I saw it then, they were strapping young men ready to love so fiercely that I had to have their love in order to be someone. In order to be recognized as someone worth more than the disease my body harbored from both male and female peers. I simply thought that if I ‘became’ the person they wanted I could at least get a taste of what love was.  I suppressed so much of who I was, who I wanted to become that I actually became a person I hated.  I became a menace to society. I began dating boys whose hobbies included; stealing, drinking, drugs, sex, and where in and out of juvenile detention. This in my heart was not the road I wanted but the only road I thought would lead me to love.

The other aspect was that my dad had been a rebel of a teenager and I loved my dad. So I thought that if he is capable of love then so are these boys. The saying that little girls grow up to find partners like their fathers is true, unless, they have been raised in an environment that fosters self-esteem that will give them the confidence to reach higher, no matter how great their fathers were.

I went thru many boyfriends and after the end of each I truly felt like I would never find another. The cycle of dating and breaking up was crushing to my already invisible self-esteem. I was hiding so much of the true me and trying to fit a mold of someone I was not that it lead me to want to end my life.

In November 1999 was my first attempt to end my life. After having broken up with a boyfriend for infidelity (can that word even be used in teenage romance?). A boyfriend who was very close to my family, who had on a very basic level supported me thru some hard times in my illness along with my dad’s death, cheated on me. That experience was horrific for many reasons and it only etched deeper in my heart that I was damaged and was not worthy of truly being loved by a boy or man or anyone for that matter.

The idea that I was damaged goods was so powerful, mostly because no one every said to me that I wasn’t. No one of influence in my life ever spoke to me about my self-worth; that I was worth everything the world had to offer. Just a short year after my first attempt to take my life I tried to take it again. Looking back the first attempt really was a plea for help, a cry for attention. The attention needed was NOT my CF but rather my worth as a young impressionable female. The second attempt really was a true wholehearted desire to leave this world. I wanted to be free of discrimination, free of societies idea of value, free of the pain that accompanied CF. All of these things I could not or did not have maturity to express in verbal format.

During the second attempt my mother worked with healthcare professionals to help get me the best care. Their recommendation was an inpatient stay at Emanuel Hospital’s psychiatric ward. In preparation for this stay, I was taken directly from the psych ward at St. Charles Medical Center in Bend, Oregon to Emanuel in Portland, Oregon by security car without my mom or anyone. Just a locked police car of sorts that way I couldn’t escape with my bags that my mother had pack for me. All the clothing she packed had to meet certain requirements; like no drawstrings, as I could use the strings to hang myself. This was and is a very serious side of illness or depression. Upon arrival and after check-in I was in my barren room that consisted of a bare mattress on the floor and toilet whose flushing system was controlled outside my locked room, to my surprise I found a note that my mother had written while packing my bags….. “ I will go the ends of the earth for you.” Writing that makes me cry to this day. That statement was so powerful and still is powerful. I realized that I could push my mother, who loved me more than anyone else on earth, to a point of breaking and she would still write something like that. She, no matter whom else, would love me thru my darkest days. These boys would come and go. I would love and hate. I would find happiness only to have it taken. Yet my mother will always be there, to go to the ends of the earth with and for me!

I never did find that one and only during my teenage years. He never came along. I did find my strength and started to uncover my self-worth, but just a glimpse.


Thursday, May 26, 2011

Wrapping it up

As we begin closing the books on May 2011, I want to conclude CF Awareness Month by saying this....

CF is horrible, not matter what side of the coin we look at.
CF has taken many things away from me and others with CF.
CF is painful; emotionally and physically.

... BUT...

CF has taught me many lessons for which I am SO grateful for.
CF has made me compassionate.
CF has made me fiercely independent.
CF has made me wise beyond my years.
CF has made me see what a blessing every breath we ALL take is.
CF has allowed me to be vulnerable.
CF has shown me love beyond measures.

... AND...

We might find a cure in my lifetime, but either way I have GOD on my side trumping EVERYTHING.
My life is fantastic because I have chosen mind over body; not every moment, but a good chunk of it.
We all will die, no pill or cure or potion or lotion will change this.


I promise to be passionate about life until I take my last breath.
I promise to attempt to make the world better while I am here or at least make a difference.
I promise to never loose hope in life and justice for our out of control world.

Thank you for taking the time to read this months posts about Cystic Fibrosis. Knowledge is power!

Life is rich and messy. I hope I have enriched it.


Monday, May 16, 2011

Face of Flexibilty

My plan to introduce a new face of CF weekly was rudely interupted by Blogger not working last week. Which is so interesting because this weeks new face of CF presents that being flexible is vital to fighting CF with positive energy. Being able to take the challenges with some degree of flexibilty will allow you to live the best life you can.

Jerry Cahill has/is doing just that. He hasn't given up doing what he wants to do or enjoys doing but rather he has remained flexible as CF continues to throw rocks in his path. It's Not About CF gracioulsy introduces us into Jerry's CF journey and how he has handled this every changing disease.


Monday, May 9, 2011

Faces of Inspiration

CF has many faces. All have different journey's, different perspectives on CF and life and each have different symptoms from CF. Not every CF journey is devastatingly sad nor hopeful. But....but....some are. A CF journey that I find hopeful and inspirational is the one of a set of twins, Click Here to see their journey.

For me, I need both the hopeful and sad stories to gleam perspective from. For me, CF has given me things in life that I would not have had the opportunity for without it. It has given me insight where my eyes would been closed.

Don't be mistaken, I want need a cure.

So today I want you to see that hope can come from devastation and something beautiful from such ugliness, by reading about The Power of Two (please click the "Click Here" words).


Wednesday, May 4, 2011

A Face to CF

May is National CF Awareness Month.... not sure how I feel about this. I mean it's great that enough "Big" people (government) are aware of CF and the devastation it brings but it also deeply saddens me to think that we need a month because of how prevalent it really is, you know, sort of like National Adoption Month (November) there are so many orphans in the world that we need a month designated to making people aware of such crisis against humanity.

Well, the primary reason for dedicating an entire month is to focus on fundraising. Another sad, reality, money. But a secondary, which should be primary in my mind, is about getting those with CF's stories out to the world in hopes to put a face with CF. You all have seen my face, but take a look at this sweet boy, Conner.

This is why May is National CF Awareness Month. If you feel have the resources I encourage you to donate here or if you don't then please take sometime to educate yourself about CF.


Wednesday, April 27, 2011

A Pillow Soaked with Tears.

I lay hear in bed the clock flashing 2:34 a.m. and my is mind racing. The tears are flowing down my face, along my hair line soaking my pillow. I am alone, B is in Sisters, working. Why the tears?! Cystic Fibrosis.

I have boarded the crazy train, my boarding pass has me seated in 'temporary' and I am not hoping to be upgraded. I want off. I want a refund. I will walk whatever distance. Please God please!

I am afraid. I am lonely. I am starving. I am suffocating. I hate it with every fiber of my being. I hate all it has robbed from me. I hate it for what it will rob me of. I hate that I am crying over it. Hate is NOT a strong enough word.

I want to be free of this g-tube and tubing connecting me to the feeding machine for the next 5 hours of a 10 hour cycle. I want to roll over in bed without having to untangle myself.

I want a cure. Yesterday. Until then my pillow will help dry away my tears.


Tuesday, April 5, 2011

An Amazing Friend

This is shout out to my friend, Gregor. Who is this person you ask? Why haven't I given notice to her/him? Well, you know its one of those too long too complicated to write out in a post things. The short version, however, is that she is amazing.

The friendship began during our awkward pre-pubescent years when it was only 'cool' to hang with a particular group/person. We were unlikely friends by most standards. She was an athletic, smart, clarinet playing weird-o, while I was an outrageously spontaneous rebellious 11-year old who disguised her smarts. We were in the same "home room" and were forced to into a friendship. Our friends were friends...Yuck! As the school year (1991-1992) progressed we sort of grew on each other. I liked her beautifully natural blonde hair, athletic build (which I would later hate her for), easy demeanor, and copy her homework.

The years of Junior High sort of flew by with the normal girl spats. One day hating each other the next vowing to NEVER talk to her again and other happenings like band concerts, school dances, sleep-overs (we practically lived together depending on who's parents let us), soccer games (which Gregor introduced me to) and more girly relationship building activities like note writing, talking about cute boys, etc. She became my life-source thru the school years. I am sure most of you remember or are parenting children thru these difficult years. There are alot of unhappy memories that come with growing up; bulling, name calling, outcasting, etc. Well, folks I was not immune to the harshness of other peers unkind words, thoughts, actions or their uneducated parents.

Ms. Gregor was by my side, for better or worse. Not really sure why, but she was and is. She spend nights and days in the hospital with me, even traveling to OHSU from Bend to be with me. She brought me homework, or just did it for me...shhhh.... She communicated with my teachers to help them better understand why I was out of class. She encouraged me to play soccer, she made me feel beautiful when the medications bloated my face just in time for school pictures (we laugh now at my chimp-munch cheeks), she stood up to my persecutors and slapped them in the face, literally and figuratively.

As the years rolled on, we sort of drifted apart during high school. We of course were still friends, but my rebellious side was in full gear and I ended up dating the boys who were in constant trouble with the law and unfortunately most of them still are to this day. I eventually stopped going to school all to together, I thought school was eating away at the possibility of having real-life experiences and on my short life span I needed to fulfill those experiences and not worry about education, I didn't think I would live long enough to use my educated mind. Until graduation started to creep up on me. I wanted to walk with Gregor, but because I wasn't around in class she had chosen someone else. I was heart-broken. It made me question why I wanted to graduate. Once I made up my mind I worked with a tutor to help me get thru senior year (unearthing my smarts making up a year in just 2 months!). I eventually made up time and was able to walk with my class, I walked behind Gregor, which in my mind was appropriate, she earned the lead.

As we both have grown into adulthood we have remained friends. Thru long distance, marriage, loosing a parent, cancer in a parent,  many other life-changing experiences and my ongoing medical issues, she has chosen to remain in my life. I have to be honest, at times, I can be hard to love. I can be opinionated, argumentative, depressed, difficult, hard-headed, hateful and down right negative. There are times when we go months without speaking or writing but when we connect its as though it was yesterday. We pick where we left off, knowing that life is messy.

She never feels sorry for me (at least doesn't show it) but encourages me to pick-up and continue on. She has been a shoulder of comfort and an ear that listens. She has spoken words of reason when mine were about to board/or had boarded the crazy-train. We have buried parents together; both under the worst of circumstances. We have laughed so hard that we cried. We have protected each other from life's unkindness. We have loved each other thru life's seasons of change. We are friends.

She is amazing. There will never be another.

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