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'

5 Years!

November 29, 2013 marks 5 years with my Gastrostomy or g-tube rather. While this may sound silly or irrelevant to most its been a journey worth marking in history. A journey to self-acceptance. A journey to self-love even as CF marks and mares my body. A journey to being able to "do-whatever-it-takes" to be healthy. A journey on sooooo many levels.

November 29, 2008 was ugly. In fact, the middle of November thru January 1, 2009 was REALLY ugly! I hated the g-tube. I hated that CF had once again dictated things for me. I hated that B and I spent Thanksgiving in the hospital. I hated that when we got home our whole life was changed and rearranged to accommodate my CF. I mean, I HATED IT.

Over the next two years I gained nearly 20lbs which was hard, even though I knew that's what would happen and the whole purpose of the g-tube But as a woman, gaining 20 pounds is brutal. I heard comments like "that can't be healthy to gain so much so fast" or "I could never gain 20lbs; I would feel so fat." Silly as it was I read into those comments and as my waist line grew so did the self-doubt. As I went from a size 0 to a size 4, I felt the opposite of healthy.

Until I looked back at pictures of myself. I was all bone and skin. I wore a size zero. I was barely 100lbs and remember feeling as though I was starving all the time, I mean I even stashed food by my bedside. I was always one to eat whatever I wanted and lots of it but being pancreatic deficient I just couldn't keep the weight on. I took lots of naps because I had no energy. I was diagnosed with onset Osteoporosis from chronic malnutrition. The list of goes on and on….

Yet, my mind was so warped about body image that I thought I looked good. I proudly aired that I could wear a size zero, not many 25 year old's can say that. My body was literally slowly shutting down and on some level I was okay with that as long as I "looked" good.

Today, 5 years later, I feel like a new person inside and out. Being on this side of the journey looking back I wish I had opted for the g-tube sooner. I now fluctuate between a size 4 and a size 6, my BMI is a healthier 21-22% and I have the energy to participate in my life. I still have difficult moments of fully accepting my new body but overall I love it. I love that I'm able to set goals like running a half-marathon and know that I have the muscle/fat to do so. I love that I can shop in the women's department and not the little girls. I love that my latest Dexa scan for Osteoporosis showed "normal" bone mass levels. My need for emergency medical intervention has decreased. My lung function has stablized. I just love all the benefits I'm reaping. But, it took my a long time to get to this point. I had to learn to be kind to myself and to have patience with myself.

Today, I'm a huge advocate for the g-tube when needed. I'm on my physicians list of folks to call when they are recommending a g-tube placement to another patient. These patients all have the SAME concerns I did in the beginning. I hate that they would choose to not do it because of body image or the fear of what others will think. I want them to understand how great life with it can be, if, they're willing to embark on the journey.

Initially doctors felt I would only need for about 5 years but honestly I want to keep it for as long as I'm still benefiting from it. Which at this time I don't see a reason to pull it. It keeps me alive and thriving!

I am glad those hard years are behind me.

~Doodlin'

Serum Sensitivity

Let's recap a bit……

September 19th, I had a PICC line placed to begin yet another round of IV's. My PTSD kick into full gear and I was overwhelmed. Thankfully, the PICC placement was text book smooth. After getting home and administering my first dose of Meropenem I began spiking a fever, vomiting and getting the chills.

I knew it was not the infection causing these new symptoms. I pushed thru the night until the next dose was due. Weird thing is, right before I started the next dose my symptoms started to ease up, which is largely why I felt it was not the infection. So, I got in touch with my doc and we decided to switch meds.

After going into clinic to receive the first dose under observation I was fine. B and I went home thinking all would flow as it should and we'd get thru the next two weeks fairly smoothly. Nope! After administering the second dose the symptoms returned.

Each time this has happened that particular medication has been placed on my "allergy" list, meaning I can't use it. The severe issue is that with these symptoms I also develop low white blood cell counts and/or neutropenia which is dangerous. This also is quickly depleting the pool of medications I can use to fight my infections, that's dangerous for someone who needs them to fight infections that left unchecked will cause severe lung damage and erode my life span.

Funny thing is that this has been happening for a few years now. While we didn't exactly know it when it began we now know we've got to figure out why my body is reacting to the medications this way. In 2011 it happened and then later in early 2013.

In order to get the medications in my system and help subdue the infection, we decided to address the symtopms with anti-nausea meds and a fever reducer. This cocktail worked for the most part until pharmacy called an told us that there is a drug reaction between the IV medication and the anti-nausea medication in where heart issues can occur. At this point, I was beyond frustrated. I now had to go get an EKG done to ensure no long-term damaged was sustained by my heart. With great relief I can tell you it did not.

At that point, I stopped the anti-naseau medication and just suffered thru the last few days of IV's. Needless to say it was a very unpleasant 3 days. The only way I know how to describe it to say that it felt like I was being poisoned.

The CF doctors and I set up a game plan to try to figure out why my body is reacting to some many medications and even ones that are not in the same family.

Game Plan:

#1) Find out if I have developed an allergy to Penicillin. Many of the IV medications are in the Penicillin family.

• This was done 11/13/13 and was negative

#2) Try to isolate the symptoms; are they truly from the medication or is it my bodies reaction to the infection

• This will be done on 12/11/13

#3) If its the medication, figure out what other medications can safely be used to help ease the symptoms (i.e. adding prednisone)

Because the Penicillin testing was negative and I showed no signs of any reaction it has been determined that my reaction to the medications is an immune reaction to either the infection or the medication. It is of a serum sickness and/or sensitivity type reaction. Finding out if I react to the medication when I'm in stable health will allow us to differentiate whether or not my symptoms are because of the infection or because of the medication.

All of this will determine if and what medications I can use in the future. I'm sort of freaking out inside. These medications are vital to my survival.

~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'

Wordless Wednesday

Recognizing 7 years of marriage. September 3, 2013

 He's just so darn handsome when he's doing what he loves. 

A little weekend trip to Newport, Oregon. Taken a few hours after completing my 10 miles! 

~Doodlin'

A Pick-Me-Up

I've had a wacky past two months. Some of it health related and some it is just normal life craziness. All of it combined had left me feeling overwhelmed. Two posts await editing that I've meant to publish for weeks now and honestly not sure when they'll be ready or rather when I'll be ready.

With all this feeling overwhelmed, this fantastic video puts a lot into perspective for me.

~Doodlin'