The D.I.S.H

The latest gossip on my lung pain mystery is that I have Diffuse Idiopathic Skeletal Hyperostosis or D.I.S.H for short. The thought process is that the D.I.S.H is contributing but not the only reason for the pain. 

D.I.S.H is a hardening of ligaments in areas where they attach to your spine. In my case, this makes a ton of sense. I've been seeing a Chiropractor for sometime now because my upper and middle back, specifically along my spine, feels very stiff. According to my Physiatris, this can present as lung pain or feel like lung pain due to the vicinity of the areas and is very common on right side. It's thought that I've developed the condition from prolonged Vitamin A use along with having Polyarthritis. 

The inflammation in my lungs from the scarring and long term affects of CF related infections, along with D.I.S.H, appear to be the majority of where my lung pain is stemming from. It feels good to have an idea of what this sudden onset of pain most likely is from. 

However, D.I.S.H is not reversible unfortunately. Once the ligaments begin to harden there isn't much that can be done. We can do a few things to ease the inflammation associated with it as well as prevent other ligaments from hardening. 

To Learn More About D.I.S.H: Diffuse Idiopathic Skeletal Hyperotosis

I've added a few new "medications" to my already ridiculous regime and thus far it seems to be working. I still have a dull pain but it's totally manageable day-to-day. I've begun exercising again, which is amazing. I release a lot of stress and anxiety through the use of regular exercise that living without for awhile had me feeling like I was locked in a small cage.

So, now you're update on the last gossip!

~Doodlin'

Wash, Rinse, Repeat....

Much of the time I feel like I'm on a circular pattern in both health and exercise. Just like with our laundry cycle of wash, rinse, repeat; I, too, feel like my health cycles thus so does my exercise routine. 

It starts to get a tad maddening when you're cruising along, all seems well, you've got a nice routine going and BAM! I get sick or some new development in my health is found, throwing me completely off balance. I quickly find myself having to create a new pattern, a new routine and it takes time to adjust to these types of changes. In fact, I just start to get settled into my new routine or pattern only to be thrown out of balance; repeating the entire cycle over again. 

I notice it the most in my exercise routine/habits/pattern. I guess because I've had CF my entire life I've grown accustom to adjusting my life based on what's happening with my health. But as anyone who exercises regularly can confirm getting back on the wagon after a break or time away is extremely difficult. Its easy to get out of shape but twice as hard to get back into shape.

For me, getting back into shape also requires finding exercises I can do given my new state of health. A good example is that after I developed Pleurisy I was advised not to run, to give my lungs/chest time to fully heal. So, I had to find ways to do just that. I don't think I was very successful at it. I did yoga, lifted weights and tried to get my heart rate up but I just didn't feel the same as when I was able to run or jog. 

Hits like these that are on repeat make it really easy to throw in the towel and no one would blame me; except for me. If I feel like I can be doing better then it doesn't rest well in my heart and soul if I don't make changes to do it better. I convinced that I have just as much control over my health and overall well-being as my doctors and medications. 

After a few months off I made the decision to begin running again. Slowly. My goal is to just run 1 or 2-miles a couple of times a week over the next 4 weeks. It's winter, which means daylight is less and the weather is uncooperative most of the time. So there is no reason to push it. After 4-weeks I'll reevaluate, check in with my CF team and make adjustments as necessary. This is me doing better. This is me saving myself from going crazy. This is me attempting to stop the wash, rinse, repeat cycle that seems to be the trend.

~Doodlin'

Vernonia Half Marathon 2015

My goal for this 2nd half marathon was simply to beat my finishing from the 1st half last September. I'm happy and elated to report that on April 12th, 2015 I SMOKED my time.

This run felt amazing. No knee pain, no crazy fatigue, lungs held up wonderfully. Only issue was my toe nail rubbed on something inside my shoe and I might loose the dang nail. But, hey! that's a normal runners issue.

I will again repeat myself in saying that for me there really is nothing that compares to running in terms of confident building, chest physiotherapy and an over-all sense of well being.

I think that having a "finish line" or end point pushes me. Unlike with CF, I continue day-in and day-out to accomplish treatments, medications, etc but there is no true finish line. There is no cure. This makes it extremely taxing to continue to carry on. In contrast, with running I've got a finish line that I'm striving for. Months and months of training yet at the end I get to experience the runners high of physically crossing the finish. Of seeing a goal come to a close.

This day I accomplished my 2nd ever Half Marathon. It's these types of accomplishments I want to remember when my health is ailing and my strength is weakening.

~Doodlin'

Where I Am

Today, I'm in a much different place than....say.... this time last year.

Today I listen to sad music and watch sad movies with ridiculously sad plots because for some crazy reason it makes me feel closer to death. My death. Unpleasant?!

Sure...but that's where I live and survive. Somehow the grayness pushes me to successes. The world of unpleasantries is grey with no sunshine. The world where no one survives is my reality. No one with CF comes out unscarred, or unnamed. I lose a minimum of 2 friends a week.  My world is a marry-go-around of emotions. I log onto FB or  some other social media forum and find out that another CF'er has lost their battle.  Emotions run raw.

Do I trust God? Do I seek revenge? Do I pass over it as though I've never heard their name?

No!

God is forever good. He alone can turn devastation into love. My God is awesome.

I'm at a place of love. God has used me to show hope and promise. God has used others with and without CF to show hope and promise. Today, I'm home thinking and pondering God's journey for me. I do believe my path lies in helping those who need it. I will encourage and support.

I'm engrossed in about 10 books. All centered on God. All showing what hope is out there if we accept. I love my God.

I'm at a place of love. Of God. My reading list is all centered on God, He alone has brought me to this place. He is my salvation, no other! I hope you can trust how great my God is.

God helped me achieve my goal of completing a half marathon. I truly have no doubts.

I don't discriminate. God loves us ALL. I believe that whole heartily. God knew from the beginning of time what kind of difficulties we'd face. He is here to deliver us. Sin or Saint. I'm most certainly a sinner.

Engaging in sexual intercourse before marriage, yet I'm forgiven. Having taken drugs, yet I'm forgiven. Harboring hate in my heart, yet I'm forgiven. So, much more....yet I'm forgiven.

My God is amazing!  His love can move you. Can restore you. Whether you identify as homosexual, gay or lesbian, jew or gentile. His love is redemptive. I love ALL of God's people.

I'm in a place of reading, cooking and simply living in the presents of those who love me.

I love finding a new recipe to cook. I love setting the table for six rather than 2. I love feeding those I hold near and dear. I love all that God has provided.

I've identified as a self-mover. Meaning....I'm moved. No else could pick my feet up or my head.... just God.

The more I got to know God I came to understand how he loves us. His love is what lifted my feet and head. He alone carried me when my body was weak. He loves me enough to see my dreams come true. He rejoices as I succeeded.

I believe EVERYTHING happens for a reason. I hurt my knee during my first attempt at a half-marthon for a reason. The reason was hard to understand at first...but its for His glory. God gave me a reason to take a break....to breathe...so that I could see what had been accomplished. What so many had pushed me to achieve. I'm so grateful.

Where I am is place of worship. A place where God is completely in control. As place of understanding. Man, my God is amazing. I sure hope you spend sometime getting to know Him. To understand how much He loves YOU. To build a relationship that is so deep, nothing...I mean NOTHING...can separate you from Him.

Do you know my God?

~Doodlin'

Honored! Top 35 CF Blogs

I'm so honored that someone has placed me and this space where my thoughts become words as worthy enough to nominate as one of the Top 35 CF Blogs.

I started this space for therapeutic purposes but it has slowly transformed into so much more. Just as this blog has transformed so have I. I've realized the power of turning pain into purpose, strive into success and sadness into beauty.

My greatest goal for this space is to inspire my readers and fellow CF'ers to see this disease differently than the heartbreak it often brings. To see the humanity in it.

Thank you ALL, I'm tremendously honored.

~Doodlin'

My Mantra in Two Words

Because……

It's calming
I literally and figuratively strive for it each day
I spend thousands of dollars a year to do so
The world would be a gentler place if we practiced this before speaking
Life is hard
Inhaling new life while exhaling the old gives us perspective
Its life sustaining
Its a Christmas gift from a sweet sister-in-law of mine
It is not guaranteed for tomorrow

Breathe in. Breathe out. Breath in. Breathe out. Ever stop and notice your breathe? I can get so busy that I forget to 'Just Breathe'. To take a moment for myself. To relish in the beauty of life. To look around and see all the blessing.

Lately, I've noticed that I don't have any breathe; spiritually, emotionally, mentally and physically (at times). I have been completely expelled. With all that has been going on with my health and behind the scenes with family and friends.

On Christmas when I opened this lovely little gift I was reminded to 'Just Breathe'. I also was compelled to look at what the Bible tells us about breathing. I ended up being enthralled with the part in the creation story where God breathed into Adam- and he lived. God gave Adam His very breath and all the days of Adam's life were sustained by that one, ONE, life-giving breath. God breathed out. Adam breathed in.

The Spirit of God has made me; the breath of the Almighty gives me life. Job 33:4

I'm reminded to Just Breathe; God's got this.

~Doodlin'

Serum Sensitivity Follow-Up

In an effort to truly determine if I'm experiencing a serum sensitivity/sickness we had decided after my Penicillin allergy test came back negative to give one of the drugs a trial run while I was "healthy" to help isolate whether my symptoms are directly related to the medication or the infection. The only way to do this was to place an IV and administer a full dose of the medication. In this case it was Ceftazidime.

Wednesday morning, I was up early and on my way to nurse treatment to have an IV line placed. This gives me the biggest anxiety. Generally, it takes multiple attempts or they are unsuccessful and refuse to try again and must bring in a specialty nurse.

Upon check-in I was greeted by a nurse who has treated me in the past. She respects my anxiety, health condition and preferences, which makes a world of difference. She placed me in a quite room and immediately hot packed the arm and hand that showed the most promise. While we let the warmth of the hot packs do their magic I read. Reading helps calm my nerves because I don't think about what lays ahead but rather I become enveloped in the characters of what I'm reading. After about 20 minutes she came back in and prepped me. In one swift poke she was in the vein, drawing back blood and flushing. Success!

After the medication was fully administered I sat for about 2 hours under observation to see if I would have any immediate reactions or an anaphylactic response. I did not. I remained hopeful that I would not react and was prepped to head home.

About an hour after I got home and settled the chills and an ache in my joints began. I knew right away this would be a long night. I took a hot bath to help ease the aches and pains and put on warm pj's. By the time B got home I was in full reaction. Upset stomach, severe joint pain and swelling along with the chills. By 6pm I was in bed trying to sleep it off. I was incredibly thankful this was just one dose and that the symptoms would ease off as the medication made their way through my system and that I didn't have to give another dose thus continuing the cycle.

Needless to say the reaction is not the infection but my body's reaction to the medication. Not what I was hoping for, however, now we know which direction to go in terms of treatment. We, doctors and I, are in collaboration on what that looks like. 

CF can be frustrating. I'm choosing to not let this frustration get under my skin but rather remain as positive as possible and trust that we'll get this figured out. I'm gonna take it one step at a time and rejoice in the small victories like; the IV was placed in one attempt………ONE!!!

~Doodlin'

No More Excuses

After completing my 10 miles in September and being on cloud nine for weeks, I've slacked. I'm still in disbelief that I actually ran 10 miles. seriously. Sure, I got sick and was on IV's but that's really not a good enough excuse. There is always something I could be doing. Strength training, yoga, or just walking. But I haven't or at least not regularly or with any consistency. I've tested the waters, I've dabbled. and shamefully, I've found every reason under the sun to not get my stride back.

Sometimes, the motivation to being regular with working out has to come from outside forces. Or at least this theory is true for me.I need someone to join me, this way I feel guilty for canceling or I just need someone to say "hey, lets sign up for this half marathon" and I on a whim say "yeah! that sounds fun."

So, now I find myself on the roster for the Hippie Chick Half Marathon for 2014. I don't think I can afford to make any more excuses. Thankfully, the run is in Spring of 2014. But I need to start doing something at least 3 times a week. I've got a workout plan that allows me to mostly be indoors until late January. Thankgoodness for a treadmill, youtube yoga and free weights.

I'm nervous and excited all wrapped into a holycowImightactuallyrunahalfmarathon ball of craziness.

NO MORE EXCUSES.

13.1 here I come............

~Doodlin'

Finding the Balance

Finding balance between who I am with CF and who I am as a whole is difficult. Its hard to separate the two. For me, I think its a journey worth exploring.

As a whole I have many likes, interests, hobbies, aspirations, achievements and more. As a person with CF I also have many likes, interests, aspirations, achievements and more. Sometimes, the two overlap and the lines are blurred.

The older I get I'm realizing that in order to be able to accept and heal from the things in-which CF takes from me or causes me to experience I must understand who I am as a whole. Understanding this difference can help me fear CF less. Separating the two will allow me to not be over dramatic about something CF is imposing because I know/understand it doesn't matter to myself as a whole. You know, sort of like, you never knew you wanted to color until someone took away the crayons.

If CF were cured who would I be?

Things I know for sure is that I would still be a.....daughter, sister, wife, auntie, a friend, a lover of books, a sitcom junkie, a foodnetwork fanatic, a pasta-eating-machine, a brunette whose hair is curly, a freckle-faced 31 year old with blue eyes, and soooo much more.

Things I'm not sure I would be if I didn't have CF........ compassionate, driven, overly sensitive, passionate about healthy eating and exercise, a Christian, afraid of death, fearful of what the future "might" not hold, an understanding that life is too short to be taken for granted, and lots of other tidbits.

Its just sort of a weird phenomenon. Of course, CF has shaped who I am and how I maneuver thru life. That would be silly to think otherwise. But what parts of me are the CF and what parts are just plan old me?

Am I driven to run because of CF or would the logical order of who I am cause me to run at this age?

Am I overly sensitive to those hurting around me or living in poverty because on some level I understand suffering because of the CF or is this just another aspect of the core me?

Am I a person who gets lost in a good book because of spending countless hours sick in bed because of CF or is this too just another part of the core me?

I don't know.

I don't know if I'll ever truly 100% know.

I have a hunch that when this life is over is when I'll know.

But I'll never stop exploring and trying to understand how CF has affected me and what parts are just me.

Maybe CF's influence isn't all bad or shouldn't be viewed in a negative light. I would venture to say some parts of having CF have made me a better person.

~Doodlin'

35-miles all for CF Cycle for Life

Riding in the truck on the way home the reality of what I accomplished brought me to tears. At 31 years old, approximately 6 years from the average life expectancy I crossed the finished line of a 35-mile bike ride to benefit and fund more life saving advancements in CF. I did it!! No one pulled me, carried me or helped me a-crossed (with the exception of moral support and words of encouragement) the finish but me, myself and my pure determination to not let CF win.

We cycled around Henry Hagg Lake and thru two towns; Forest Grove and Gaston. The company B works for Cascadian Landscapers, Inc supported the team and my ride. I was the ONLY rider with CF and dubbed the Ride Ambassador.

Team Cascadian Landscapers, Inc!

The weather was perfect. Not too hot not too cold. We shared laughs along way, struggled up a few hills as a group and ended the day by eating while having a glass of wine on the lawn, that is after I laid like a dead person to regroup myself. Good greif!

The ride itself was for the most part easier then the previous time I rode in Cycle for Life. There were a few good size hills, which were mostly around the lake and the rest were rolling hills. During the first 18 miles had a few what-the-heck-am-I-doing thoughts but felt good overall. However, the last 10-miles or so were excruciatingly long. I thought we would NEVER get to the finish.

Since we rode with my hubby's side of the family (sister, mother and father in-laws) they all would "check in" to see how I was holding up. Towards the end, last 2 miles or so, we could physically see the winery where the finish line was and I seriously felt like giving up. I was tired, my legs were rubbery, I was having a very difficult time keeping my breathing rhythmic and I was just plan done. Those last two miles felt like eternity. The worst part was the finish was just at the top of a hill. A huge hill.

But we did. I did. I'm so proud of us ALL. I'm so thankful for those in my life who support me and push me to reach new heights and not let this disease dictate what I can and can't do. I rode for all those who are struggling, those who have lost the battle and for those who gaining new strength every day.

What a ride!

`Doodlin'

With a Heavy Heart

 

One of the hardest parts of being active in the CF community is losing a dear soul to this disease. While I might not have met these dear people in person I have prayed for them, I have cried for some, and I have laughed with many. Those whom I have had the pleasure of knowing face-to-face I have held their hands, wiped their tears, watched their eyes sparkle with every smile and delighted in their lives. With all of them I understand their suffering to the core. I get it.

This last year has been particularly hard. I have watched far too many gain their angel wings. It breaks my heart each and every time. It never gets easier. Ever. In fact, it gets harder. The older I get the more friends I lose.

My heart is heavy for them, for their families, and for the ones who love them to infinity and beyond. As I write this post another CF'er is preparing to say goodbye. To give final hugs, kisses and I love you's. They are understanding on a very real level what dying is. They are way too young for this experience. They still have so many dreams, goals, hopes and want-to-do's.

This life we're given is so temporary. The same God who gives us breath is the same God who takes it. I know God has a plan for every one of his creations whether we believe it or not. I believe God is good. Even amongst all this suffering God is good and just. I pray that those who have lost their battle in this life have gained a full understanding of God's grace. The God has shown them what their lives meant and how it glorified him.

I still grieve their loss. I still feel a heavy burden as a life ends.

I promise to keep fighting. To keep after a cure. Its all I can do. Until we meet again dear friends know you'll never be forgotten.

~Doodlin'

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'

Nutria or Neutropenia?!

It's been nearly three weeks of IV's and no real sign of improvement. In fact, at my follow-up appointment last Tuesday my PFT's had dropped slightly, that, coupled with having low energy levels led to the decision of going one more week of IV's. Fine. Ok. Lets get this down.

Come Wednesday I was feeling even worse. Fevers with bouts of extreme sweating. Like soaking a t-shirt just sitting down along with my reoccurring joint pain this time concentrated in the ankles. After contacting my fabulous CF Team, a rush blood draw followed by a trip to urgent care, it was discovered that I have Neutropenia.

Sort of sounds like a rodent, Oregon has a Nutria. Cute Beaver like things! 

But, truly Neutropenia is pretty serious. It's believed that my onset of Neutropenia is from the IV meds. Therefore, we stopped those immediately and the PICC was ordered to be pulled, since PICC's have a high blood infection rate. The main issue with Neutropenia is that it suppresses your immune system because of the extremely low white blood cell counts. This leaves the patient very vulnerable to bacterial and fungal infections. Just what I need. Where's the cute Nutria? 

I tell you I'm not a simple case. Just when we think things might be smoothing out we hit a large Nutria.

On the upside, I can shower. Oh, yes. A shower. It was like the fountain of youth pouring down on my body. Taking a bath with your left arm wrapped-to-the-nines in plastic wrap raised as far in the air as I could muster was not doing it. 

Meanwhile, I'm in lock down mode to ward off infection. Doing blood work tomorrow to see if any white blood cells have rejuvinated and resting.

So, next time you hear Neutropenia don't mistake it for a beaver-like rodent called the Nutria!!

~Doodlin' 

The Thing is...

The longer I breathe, talk, walk and participate in this life I find myself in different places, at different junctures, breaking and making assumptions. The one thing that I keep coming back to is this idea or belief that I was chosen to live in this era with this disease. To be clear I do identify as a Christian.

Just when I find myself in a deep valley the sun shines thru a plateau. Just when I feel like I'm breathing under water a pocket of air envelopes me. Just when I feel that the situation is hopeless, hope smiles back at me. I believe it's some what human nature to have such emotions, its part of the journey. You can't understand what its like to be hopeful if you've never been hopeless.

Over the past few months I've been on a roller coaster with my health. I have so desperately wanted off.  The thing is I have total control as to whether I stay on this roller coaster or not. Sure, I still have to deal with my health, be diligent and take care of myself, but it doesn't have to control anything beyond that. It doesn't have to be a looping track, over and over at high speeds leaving me dizzy.

God knows my journey, he plotted it for heavens sake. I believe and sort of always have that my CF is more about God than it is about me. He wants to use it to show is grace, mercy and love to the world. Does this knowledge make it easier when I am in despair. Nope, not really, there are times of great sorrow in this house. It does make me draw closer to God though. God never said it would be easy but that it would be worth it.

I want my life to be worth it.

I want to look back and say that I did rather than I couldn't because _____.

So, the thing is....

step out in faith
be a doer not a can't-er
get off the roller coaster and put my tennis shoes on and start walking
follow my heart
speak edifyingly of others
loves those who hurt
just do
remember that love does

Making assumptions about our lives can leave us stuck. It can dictate where we go and how we do it. Leave assumptions where they belong, on the ground. Because more often than not your assumptions will betray you, leaving you feeling foolish. I have assumed that 37 is my golden number. The average life-expancty but the closer I get to 37 the more I feel I've assumed too little of myself and my God.

I think I'll attempt to take each day for what it is; a new opportunity. Instead of assuming what each day is.

`Doodlin'

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!

~Doodlin'