Neutropenia Update

You know one thing that I am not great about is updating you all on my medical prognosis once I've been diagnosed. It's so easy to complain or write about how frustrated I am during a crisis, in fact its really helpful on many levels. I get the frustration out instead of holding it in until it boils over in anger or something self-destructive.

I do need to learn to go back to analyze the emotions when I'm well and in a good place mentally against those emotions during the crisis. I think it would be helpful to "see" what trigger points I have. What my tolerances are. Address the fears associated with that diagnosis or at least begin to work thru the fears now that I have the energy and am no longer in survival mode.

I mean, HELLO!, its the whole point of this blog; to turn pain into purpose or something inspirational.

Back in February after 2 weeks of IV's I developed Neutropenia. You can read the original post HERE. However, Neutropenia can become very serious if not addressed quickly. Thank the heavens I have great folks tending to me, as soon as the test results came back from a blood draw, they were directing me to the ER or Urgent Care whichever I could get my butt to fastest.

I am happy to report that within 48-72 hours of my trip to Urgent Care along with the removal of my PICC line I was beginning to feel more like myself. I continued weekly blood draws to ensure that my white blood cell count was continuing to rise. I am now rejuvenating those precious white blood cells at a healthy regular rate.

I'm fairly confident that I know my body. I know when something just isn't right and so does my doctor because I plow up their emails, pagers, and I park my tush in their exam rooms frequently until we figure it out. But sometimes I forget that medicine isn't the fix all. It too can have serious if not devastating results

Life is good. I'm slowly regaining my strength. I've been walking the dogs again and incorporating running. It's amazing how quickly we fall out of shape and how difficult it is to get back into a workout routine. I guess that's my biggest obstacle and it's really just a mind game.

My personal goal is to run a 10k this summer. So, I've got to stop the mind games and just lace up.

~Doodlin'

Redirecting Negative Touch

Lately I've been knee deep in books that focus on chronic illness. The books range from addressing living joyfully to managing expectations for patients and caregivers alike. Much of the time I find myself skimming over large portions of the book because I'm not "new" to the chronic illness world, therefore, things like "how to tell your family and friends" doesn't apply at this juncture. Important aspects for newly diagnosed for sure but not after one's walk the road for nearly 31 years!

However, there have been a few reoccurring topics in nearly all the books that have stricken a cord with me. So much so that I've busted out the highlighter and pen to make notes in the margins.

For example, the latest notion that I'm analysing in my own life is the idea that those who have lived along time with a chronic illness develop unconsciously negative touch perceptions. It makes sense. If you've endured countless medical procedures recoiling from touch can develop. Which if left unaddressed into adulthood or long periods of time can have a negative affect.

The amount of stress the body endures during many medical procedure I think is grossly under-addressed. Sure, the doctor or surgeon explains the procedure but the actual physical process the body goes thru during the procedure is rarely talked about. For me, having a PICC line placed is extremely stressful. I sweat, I cry, my muscles are in a state of constant flexing for the duration of the procedure. This is probably pretty mild compared to other more invasive procedures. But the brain has to react to this stress and it can be difficult to reverse the brain's response to recognize that this is not permanent, particularly if its a procedure that is frequent.

Having a negative touch perception makes it hard to connect with friends and family who might want to hold your hand to pray or give a welcoming hug. It can also carryover into ones sex live. Touch no longer becomes pleasurable but rather a precursor to extreme stress or pain.

I think in my earlier years I was just the opposite of recoiling. I was over the top; eager to hug, hold hands or walk arm in arm. But now as an adult I have switched gears, without even realizing it. Maybe because over the years my brain has connected that stress or pain as a permanent state due to the frequency.

I hug way less, I have a hard time accepting a hug from B without asking things like "what was that for?" thinking that touch is associated with the giver wanting or needing something from me. This plays an unwelcome role in our marriage at times. It has caused a bit of confusion at times between B and I. It leaves B thinking something is wrong with him or that he has upset me in some way. Not exactly the perfect recipe for intimacy.

I don't think I'm completely closed off to touch but rather I seem to have episodes where I recoil. As I've thought about this the episodes seem to happen after a round of IV's or after a stay in the hospital. It takes me a little while to warm back up to the idea of being touched.

In all this thinking and realizing I wonder what I could do during those times when touch largely is painful to keep me from focusing on the negative aspects of touch and redirect it to the positive. I wonder if any of the following would work:

1. Shake hands with the person before they draw my blood
2. Have B rub my back immediately after a PICC line is placed
3. Allow someone to comb my hair or braid it while in the hospital (most women LOVE having their heads massaged)
4. Have a loved one paint my toe nails or give a little foot massage; this could also help when I'm having joint pain.

Everything I have read uses pleasurable things to redirect the brain. To help connect pleasure with touch. All the things in the list above are ways that touch is relaxing, inviting, loving, caring and pleasurable to me.

Anyone else have a similar experience?

~Doodlin'

Taking Away My Choice

Woke up today to an email from the CF Foundation about a new infection control policy that they are implementing, the policy statement in no way gives us evidence to support the new guidelines.  A snippet below (read full text thru link provided above).

"The key elements of the Foundation’s new policy are: 

• At any CF Foundation-sponsored indoor event or meeting, including gatherings like committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.

• At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other. 

• Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any CF Foundation events, meetings or offices."

 Here is the thing. This impacts more than just what the CF Foundation does. The Foundation sets the standard for other organizations that serve CF patients including insurance companies. Therefore, the organizations that host or sponsor  stuff like a CF support group will most likely find themselves in the position of having to discontinue those face-to-face types of functions as their insurance will forbid such business practices. Unless they host it outdoors and maintain 6ft distance. Not gonna happen in my neck of the woods.

The other thing that really is getting under my skin is that CF is a progressive disease. Meaning, the infected's health declines overtime. Sure, the germs can sort of be dodged but then again not really. Study after study has come out about the fact that MRSA is ramped and not just in CF but in everyday normal healthy individuals. Pseudomonas in CF is more common than not having it, sort of par for the course thing.

On FB some have alluded that those who lost their battle with CF *might* still be around had these types of strict controls been in placed years ago. I challenge that notion, CF is what took their precious life and those who are alive today are so because of the wonderful advances in medication that the Foundation has largely been behind. CF is more promenent today than 30 years ago yet most of those patients died at very young ages and I highly doubt they socialized together as coordinated events were nearly none existent then.

1. Should we be cautious? YES 
2. Should there be some sort of infection control? YES (and there is)
3. Should we take measures to wash our hands after going to the grocery store, bathroom or attending an event with other CF'ers? YES
4. Should we as CF'ers or caregivers to CF'ers understand the risk of exposer? YES
5. Should we be compliant with all treatments? YES

In high areas of concentration, like the Bay Area, what's to say these patients aren't coming into contact already without knowing it? What about CF clinic days (many CF'ers come at the same time) what if they are exposed while waiting at the pharmacy to refill prescriptions but do so without knowing it? The what-ifs go on and on....

I simply feel that it should be my choice. The patients, as to how much exposure I'm willing to endure. No one else. Ever. 

Parents will of course make that personal decision for their children and they should, but, I highly recommend to carefully weigh those risks against the mental and social well-being of your child. The ability and will to fully-live is more powerful than any drug. I personally don't want to live to the ripe old age of any number if I can't fully live. I, like, many CF'ers had to find the will to carry-on without the support of others who understand my trials and tribulations. Its like walking thru hell and back. The path was riddled with deep depression, destructive behavior and no will to live. That lethel combination of isolation almost contributed to my death, not CF. Upon finally being able to connect with the CF community I've found support, friends and inspiration. I've meet others decades older than I, that's inspirational, that's gives me fuel to be complaint and carry-out when things get tough. 

This whole business is a slippery slope. I, for one am against it being mandated. Give us the option or choice. It is, I, that has to live with the consequences but until there is a bona-fide cure we all will find the same fate. 

~Doodlin'

Listen Up, Not All Calories Are Equal.....

A few weeks or days ago an article about calories was floating around and I happened to take a gander at it, then upon finishing the fairly basic overview of the fact that not all calories are the same I see a young child with CF eating a famous black-and-white cream filled cookie for breakfast, because of the caloric demands CF'ers need.

Here's the thing. Most CF patients do need tons of calories per day. I mean a truck-load of them. And if we're honest all those gorgeous brightly colored fruits and vegetables at your local market do very little in terms of calories. It's not uncommon to hear CF'ers talk about eating a value meal from any of a dozen fast food chains frequently (daily even). Heck, I used to pull my beat-up car thru the fast-food window numerous times a week and I thought nothing of it, in fact I thought I was being "healthy" because my body needed and required those calories.

While growing up I would come home from school to eat an entire box of Frost Flakes. Yes, the whole sugar-loaded-zero-nutritional-valve box of garbage. My mom and I we're happy to see that I could put away so much for the sake of the calorie intact burden I was under each day. My mom would send me to school with a few bucks, because when I reached high school they began putting vending machines loaded with junk in schools, and it was an easy high-dose of calories.

I needed the calories and still need a truck load of calories.

However, and this is a BIG but, not all calories are equal. Just like anyone else on the planet we are only as good as what we put into our bodies. I, probably, better than any parent or non-CF'er understand the burden of consuming those precious calories. I'm here to tell you that as an adult all that junk plays a dangerous role later on. Hey, I'm not here to judge. I've been there, I traveled that route and I'm here to tell you its not as simple as it seems. These habits come back to bite us.

As CF'ers are living longer we're learning more about proper nutrition for us rare breeds and how to get those calories. It should NOT be from cookies, junk food machines but rather wholesome foods. Why?

Wholesome foods (fresh veggies, fruits, nuts, grains) do more than simply help us reach our daily caloric intake. Foods high in dairy promote mucous production, so finding alternatives is highly beneficial. Many foods can help with inflammation, which most CF'ers will at some point suffer from. They can help prevent Cystic Fibrosis Related Diabetes (CFRD), help prevent kidney stones, probiotics can help reverse or ease the negative affects of frequent antibiotic use. And on and on.....

Something that many don't realize is that CF'ers have chronic infections or bacteria growing at rates that the body can't control. What does bacteria eat or need to grow, sugar! So, why are we pumping ourselves full of sugar-laden foods. Not just cookies, baked goods, and candy. But what are we drinking? What about that bag of chips? You don't need to have a medical degree to find this stuff out. A simple search on the internet will give you more information than you probably want or just glancing at the ingredients.

I can tell you first hand that over the past 10 years I have slowly made changes to my eating habits. I'm not perfect. I still enjoy a Dr. P every once in awhile. I still pop a favorite cookie into my watering mouth. But, I do so because its a guilty pleasure and not something I rely on to meet my calorie demands. I make as much as I can possibly muster from scratch so that I can control the calorie levels with supplemental additives. I make smoothies from fresh fruits and add things like coconut oil. I pack along trail mixes and mixed nuts. Ever study the labels on nuts or nut-based butters? They are loaded with calories and are good for you!!! I don't buy milk and use milk based foods sparingly.

So, next time your temped buy the cookies for breakfast think about making a shake packed with fresh fruits, almond butter, a tsp of coconut oil, coconut milk or whatever fancy's you. I promise you'll feel better over-all. Your body will thank you years down the road.

because....

Not All Calories Are The Same!

~Doodlin'

So Much Time A-wasting

Being that I've been running, errr.... attempting to be a runner for almost 2.5 years now. I've grown accustom to using a stop watch or some sort of clock to track my time. After-all tracking one's time when running is important. It gives you a lot of information about your workout or run. Things like average mile per hour should begin to improve the more fit you become. Anyways, you get the point, time is a good measurement or benchmark and can lend you a lot of information.

The amount of time we CF'ers spend doing treatments is huge. Particularly when you start to calculate it over the average life span of a CF'er. We're talking months and even years. Its crazy.

A CF'er gave a speech then turned it into a blog post about this very subject: Time. It's worth the read. 

Run, Sickboy, Run - Cystic Fibrosis and Exercise: We Need More Options!!

"Any treatment that I can take that isn’t a huge burden on my time really excites me. Any potential treatment option that I can take that can potentially “give me time back” excites me even more."

The main point (from my perspective) is that we, the CF patients, need more options that not only improve quality of life but aren't time consuming. Most who haven't been around a CF'er during treatment probably can't even begin to comprehend just how much time is used up on treatments. We (CF'ers) for the most part are willing to give up precious time for a better quality of life. In his post, he demonstrated just how much time his treatments take him by using a stop watch.

How have I never thought to do this simple experiment? I'm inspired to do it now! I'm sure his treatment times won't be too far off what my will end up being but you never know. His regime might be less extensive as mine or vice versa.

The other factor is that when we're sick (haha!), I mean when our symptoms are exacerbated the amount of time doing treatments greatly increases. With out doing the time experiment I would estimate double the amount of time.

Phew! That's a just crazy. No wonder I'm always on the look-out for new activities to do while doing treatments. I get bored. I need stimulation during those times to keep me from focusing on how long I've sat in one place puffing away on a nebulizer. I like to be busy and this stagnate time frustrates me. I think of all the things I could be doing or that need doing, yet I sit on my tush puffing away. 

I think we're still a good many years away from life without treatments. We're making amazingly fast progress but anyone who has CF more than likely has conceeded that this time is just par for the course. 

Anyone have any good ideas for activities that are not apart of the obvious like reading, tv, etc?

~Doodlin'

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'