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'

Like Clock Work?!

Its Fall. Its fairly easy to tell when Summer slips away letting Fall sneak in here in the PacNW. The days become ever-so-slightly shorter, the leaves on the trees begin turing a beautiful burnt orangish/red color,  the temperatures are cooler and the early morning hours have a crispiness to the air with just enough fog to give the hours just prior to sunrise a mysterious feeling. There becomes more rainy days then sunny days leaving you wanting to snuggle with a blanket and book in front of the fire. This is Fall.

My body knows Fall. I am coming to the conclusion that with Fall comes illness; for me. It's like clock work around here. September or October and I'm out of commission. I haven't the faintest idea as to why or how.

Maybe, I get caught up in the Summer time fun, thus draining myself of the reserves necessary for when the weather changes and/or the cold/flu season hits?

Maybe, there's something in the air as Fall approaches that my body doesn't like?

Maybe, my CF is on a cycle, wherein everything works great, treatments do their job and then the bugs find a loop hole, causing an exacerbation?

Whatever it may be I can tell you its Fall.

Just like we can expect Summer to turn to Fall, I, too have change from healthy to sick. My leaves (mucus) have changed colors, my days are shorter (naps) and I feel cold and foggy wanting to snuggle with a blanket and book by the fire.

At last, its just a season. With its own beauty, lessons and renewal.

~Doodlin'

Pushing the Boundaries

Being an active member of the Cystic Fibrosis community has been so empowering. It's truly inspiring to see so many carrying out their dreams;  educating us all about what endurance means, what waking up each day with a purpose looks like, and what it truly means to change a culture. Over the past ten years the culture of having CF has been changing. From being a victim of a life-shorting disease to one of making CF be the drive to excel and reach new limits.

Only after getting to know a number of those in the CF community did I really look at running as a way to life longer, truly. I saw a transformation in how healthy these people were, but I also saw how they endured even when CF had a mind of its own, which it often does.

This past week a video project that some in the CF community were apart of was released. It's aw-inspiring. It makes me want to reach for new heights. To say the heck with limitations and just push as far as I possibly can. I encourage you to watch. These CF'ers are flippin' amazing. I wanna be like them: one long distance at a time.

Living Xtreme Beyond Cystic Fibrosis

In my running endeavors I decided to attempt to run the 10-mile leg of the Newport Oregon Half Marathon.  On Saturday, September 14th I did it. I ran the farthest to date of 10 miles in 1:48. The run was gorgeous. We started out on pavement, worked our way to a gravel road along a Big Creek Reservoir and then to the beach for the last 4 miles. I knew going into this that the beach would be the most difficult part since I have never trained on sand, and it was. It was all mental and a number of times I wanted to walk but I didn't and I'm so glad I didn't. Running a crossed the 10 miles marker with Hubbs cheering on the sideline was so freeing.

I kept this goal under rapes because after the 10k in August I was sure I could add that much mileage in such a short time. I didn't want to over do it and cause injury or ware myself down and get sick. So I just continued to train as usual and when the day came I felt like I would know if I could do it or if I should wait. I wanted to be realistic.

So, now that I have 10 miles under belt I'm ready for a new goal!!

~Doodlin'

The Moment I Became a Runner!

I hear it all the time "Oh, I run!" or "I'm a runner!"

My question is when did you become a runner?

At what point did you feel like you could label yourself as a runner?

I ask because I think I've had that feeling. I think I might be a runner.

My epiphany came after not running for a few days after having ran every other day for almost 3-months. Something was amiss. I just didn't feel right.

After lacing up again a few times a week I feel good again and whatever was amiss is no longer.

So....this is the moment a runner is born. Is this when I became a runner?

~Doodlin'