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.

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