Tips or Tricks?

From time to time I get asked questions from parents whose child or children have CF. The most frequent question I am asked is "What tips or tricks do you have for parents {whose child has CF}?"

My answer in short is always the same. Allow them [the child] to grow or learn to be passionate about life. Without the passion all the hours spent doing treatments, attending doctors visits and being sick will take over leaving them bitter. When we have a passion we see the "crappy" stuff as a means to an end. We have to do the treatments in order to carry-out our passion.

It also helps us to put the "time" it takes to all the treatments into perspective. I mean, an hour twice or three times a day, is nothing if your able to spent 6-8 hours living a full life, right? Sure. There are times when it really totally sucks but in the grand scheme of life its really time that we'd waste watching tv or surfing the internet or texting our friends {by the way you can do all those things while to doing treatments}.

Don't stop your kids from playing sports or playing a part in the upcoming play. Just make the treatments a must-do before they can do what's fun. The fun stuff is what keeps us mentally okay. Chronic illnesses have an incredibly high rate of depression, so the fun is just as necessary as the other stuff with fancy medical names.

Over time they will see that in order to be healthy enough for the fun stuff they'll have to do their treatments. No one {not even "healthy" folk} can run, play the flute, sing in the choir or recite the lines in the school play if they can't breathe. The rewards for doing the treatment will be the ability to participate and that is worth more than mom or dad nagging. BUT it has to be instilled early on that treatments come first so we can do the fun stuff. 

So, to recap my tips are:

1. Find something to be passionate about
2. Instill that treatments and taking care of ourselves comes first
3. Allow your child to do participate in whatever activities they want (within reason) as long as they do their treatments.
4. Set your child up to succeed. Set up a schedule for treatments that works with their hobby or passion.   {Example: get a portable nebulizer so that they can do treatments while driving to games, plays, friends, etc}

Overall, remember they are more the CF. They need and want to do what everyone else is doing and thats okay, as long as treatments are done!

~Doodlin'

Bag-O-Motivation

December and now January have proved to be incredibly trying months from many different angles of life. Surprisingly my health is not one of those aspects. So, today, when I got a large bag with my name on it that instructed me to open one gift after doing my nebulizer (breathing) treatments each day as motivation, you can image my joy. In fact the joy was so overwhelming that it overflowed from me like a waterfall.

You know I get many many words of encouragement, which I love and will always need from time to time. But this gift was so thought out and so perfect as a jump start to gaining motivation or the reward factor of changing a schedule to accommodate the treatments. Even though I am almost 30 years old, I still need to be rewarded. And let me tell you its so much more pressure (positive) to earn a reward from someone else, rather than me giving myself the reward. I feel obligated to follow thru on my end of the bargain you'd say.

My first gift was a lollipop and a little printed "you can do it" message. While I was doing my treatment tonight, I thought about all the parents who attempt tirelessly to get their children to sit still and do their treatments how great something like this would be. A simple gift to pull from a bag if one does their medications is marvelous. It could be a sticker, piece of candy, a piece of change to put in their piggy banks (dime or a quarter) or whatever your child would enjoy. I also think that this idea works for any adult who maybe going thru a rough time.

Do you know someone who could use a few days of encouragement or motivation? Maybe give this a try it sure warmed my heart and put a fire under my backside.

Thank you Nancy for this wonderful gift.

~Doodlin'

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!


~Doodlin'

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.

~Doodlin'