Back in the Saddle….sort of!

Last week, despite feeling a bit crummy, I got swept away by all the "new year's resolution" workout pics on varies social media sites. I know… I'm not immune to peer pressure! I decided to get back in the saddle, er, lace up my running shoes. I decided to run 1-mile every other day for a total of three days. 

Wow! The first run back was ugly. I mean ugly. Its amazing to me how quickly we loose our fitness level. Sure, I've been doing yoga and weights but my goodness I was not prepared for what a slap in the face 3-months of non-running will do to ones fitness level.

I hacked, gasped and down right felt like I was never gonna catch my breath. But I did….eventually. The sweat poured off me despite the fact that the high that day was only 43 degrees. Down right ugly I tell you! I did get three days of 1-mile each under my feet. I am VERY eager to get back to where I left off and feel good after 5-6 miles, even though my fitness isn't to that level I can feel my muscles wanting it. 

But it might take longer that I really want. I ended up back in the doctors office Wednesday afternoon. I just feel crummy. I'm extremely tired most of the time, a slight increase in cough and night fevers. We settled on doing 15 days of oral antibiotics with a few days of rest.

I feel like its one foot forward and two steps back but I'm determined to get my running mojo back.

Tanner and I completing our first 1-miler! He's got WAY more stamina than I and he alone is responsible for our time of just under 10 minutes a mile. He was totally pulling me along and urging me forward to greatness. Such a good buddy!

~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'

Mo'orea, Sharks, Dolphins, Stingray and more....

Last time I left you with a some what gloomy post so to make up for it I wanted to tell you that my life is amazing despite a few rough patches. In November, B and I went on the vacation of our dreams. Many people helped make this trip happen, from the doctors who rescued me with medication right before I boarded the plane to those who helped financially.

We've all seen the picquese scene of turquoise blue ocean water with fancy little huts extended out into the ocean. Well, thats just right where we found ourselves at on the morning of November 2nd. I had an entire suit case full of meds but I vowed that I would find peace on this trip. Peace with the craziness of a life with a terminal illness. I think I found it.... the trick is to use my muscle memory when the seas get rough again!

Mo'orea, French Polynesia

The beauty is beyond real. The 82 degree average temperature warmed my weary bones. The sounds of the ocean lapping against the shore placed me in a state of absolute calmness.

Wishing I could transport myself back to this heavenly hammock! 

We took the plunge as soon as they took us to our over-water bungalow. The water was SCREAMING my name.

We lived in and on the water for 7 days! The ocean is sort of magical. Its calming, yet invigorating. My lungs thrived on the salty air. I began to feel good again even with having been placed on antibiotics just before leaving Oregon.

Just look at this sunset. I don't know how your spirits can't be uplifted with a view like this. I sort of had a huge revelation watching this sunset. God allows all life to begin and he beautifully takes it. When my time comes I hope those who love me will have this sunset in their vision. A sign of a life wonderfully lived in full color.

Yes, ladies and gents! I ROCKED the g-tube. I made that decision along time ago, I am beautifully imperfect. The fact that I have a few scares and the toobie are not gonna slow me down. Everyone on this planet is insecure about something, so let's get over it. Let's see each other for who we are, what our hearts are about and not what our physical being appears like. Plus beauty is in the eye of the beholder. My hubby loves me and my imperfect body!

Sharks and Stingray, Oh My!! I have to admit I was a bit terrified during the boat ride out to visit with these awesome sea creatures. B was beyond excited. Swimming with sharks is a bucket list item for him. The bad part, he now wants to have a close encounter with a Great White. Lord help me!!

 For anyone wondering, B is a huge U of O Ducks fan!! In case this photo left you lost.

My dream since I can remember is getting close and personal with a bottle nose dolphin. I even had my room painted ocean blue with boarder wall paper of dolphins. Its a known fact that I love dolphins. A huge thank you to those who made this possible, you know who you are!

(Goodness, I love this man!)

In the end, you were able to let go. Let go of the pile of bills awaiting money that may never come, the laundry that's in piles, the emails and phone calls that probably won't be returned, the looming threat of early death, the possibility that having a family might not be our path, all the stress that this life places upon us. We got back to a place of thankfulness, silliness, appreciation, love, adventure, and each other.

Until next time! But until then life is a blessing. This space that I call life is truly amazing. God is forever good.

A big THANK YOU to my in-laws, my mom, and my hubby for working his fingers to the bone so that we could have this experience. I love you all!!

As a side note, the pink top and straw hat that I'm wearing is because the antibiotics that I was on made me sensitive to the sun. I didn't want to burn so I found this top and it helped prevent what could have been a nasty sun burn. Plus that hat is a very cute accessory for other outfits!!

~Doodlin'

There and Back Again...A Tale of a CF'er

Its been awhile. I know. Lots has happened both magical and not-so-rosy stuff. From a hospitalization in early October to a lovely dream come true vacation to being sick just before said vacation to a crazy holiday season to being sick again.

There and Back...again!

The past few months I have not been healthy. Just when it seems like we've got it under control and I actually begin to feel slightly better I find myself sitting in the doctors office getting another round of drugs, blood work, etc.

Its toying with my emotions. Like boarder line depression. I'm whinning. I'm getting this out of my mind and soul so I can see the sunshine. I want to be "there" as in back to my base line. I worked so hard for two years, the results were inspiring, but this stint of "back" as in sick is sucky.

As it stands today my lung are rocking FEV1 is 82%, weight is a healthy 123#, energy level is way low, sinuses are looking nasty with a nasty culture of Pseudomonas.

Game plan: tackle the sinus problem. Antiobitics, steroides (I jokingly asked if i'd "bulk" up) and a CT scan.

I should note that I have the most compassionate CF Care Team. Amongst my ugly crying today in clinic they compassionately lovingly guided me back to sanity.

This picture I took on the drive into the city for clinic this morning and it really captures how I feel inside. A ray of light buried among the fog and clouds. But the fog will lift I'm certain!

~Doodlin'

Allergy = Hospitalization Day # Dos

I am happy to announce that hopelessness didn't consume me entirely!

As the night wore on and I realized that I was in for the long haul with no sleep and nothing from home but my cell phone, I decided to utilize my Facebook application. Thank goodness. I put one post about my dilemma out there only to get 29 comments. This may sound ridiculous but it kept me in the game, each time a new comment was posted my phone would ding announcing the news. That ding became a sweet sound of reprieve. I was taken away to FB land to read something that was encouraging and heart-warming. Thank you all.

By about 4am my phone battery had died from all the use and no charger but my CF doctor came in that morning unusually early because of all the patients in different hospitals that he needed to see. I was beyond thankful. During our discussion about the nights events, we both felt that changing the Zosyn to Meropenem was what absolutely needed to happen as it appeared that I had developed an allergy to the Zosyn.

This is not good news. The changing of medicines, yes. The allergy, no. There are only a few medications that Pseudomonas is sensitive to, meaning that can battle the nasty stuff. I now am allergic to  two of those precious medications.

The nurses immediately began to infuse the new drug and I slowly started regain normalacy. The vomiting stopped immediately, although I was left with no appetite for most of day. The no appetite thing had nurses a bit on their toes since I need approximately 3500 calories a day. The use of my feeding tube was halted because the hospital didn't have a particular connector tubing that my MIC-key button (g-tube) required thus zero caloric intake for over 12 hours. B would have to bring the proper connector up later that day. I still could not sleep. All the drugs that were given to help ease each symptom left me in a haze. I would close my eyes, toss and turn, fluff my pillows but sleep would allude me each time. My mom came up sometime in the day light hours of the morning, she came in tow with a bag that B had packed me of all the stuff I wanted from home. In my exhaustion I really wanted nothing to do with most of it besides the phone charger so that I could update my dear and loyal FB friends as well as return the 20+ text messages. My mom stayed the entire day, she simply sat played on her new iPad toy by my bed as I desperately tried to sleep. We would spark a conversation here and there but not much. I really really really wanted to sleep. That's what mom's do, they sit by your side with no expectations to be entertained.

Sleep is a very allusive function while in the hospital under the best of circumstances. In the hospital that I am typically admitted to they do 'purposeful hourly rounding' as the sign in my room to eloquently read. The nurses and/or CNA's came in every hour to take vital signs (temp., blood pressure, O2 stats) in addition to entering to administer my IV drugs, oral medications, etc. The traffic to my room was ridiculous but understandable.

Later in the evening I had a few visitors. My brother came with his two kiddos and my hubby came to stay the night. By this time I was starting to regain some strength, enough so to make a few trips to the bathroom alone and I even ate a light dinner. As night time approached I asked if I could have 4 hours of uninterrupted sleep. My night nurses were very much in favor of this. It was not the best sleep I have ever had but compared to the previous nights events it was bliss.

Thursday, 9/8/11, began with a routine admittance and was worsened by an allergy. By Friday evening I was back to the status I had been admitted for. Hoping that Saturday would show improvement and we could start to look a release date. The one thing I was worried about prior to admittance, the Picc Line, was the only thing working.

Yay, Picc Line!

Thank you everyone for all your kind words. Sometimes we don't realize the full effect of our actions and/or words. Yours helped me get thru the night, gave me the strength to not break down in tears and to not let the feeling of hopelessness consume me. I have a new respect for social media. We don't know what post will make someone laugh or cry or renew their courage.

~Doodlin'

Pulmonary Hemoptysis= Hospitalization Day # Uno

Oh, the joys of the unexpected.

Last Thursday (9/8/11) I was caring out my morning rituals as normal. Which begins by taking long list of medications, eating breakfast, getting dressed and lastly taking the dogs outside. It was a nice morning and so I decided to hang out with the dogs in the backyard to get some fresh air. During that time I had a coughing episode, which is not unusual, that produced bloody mucus. As I kept coughing and spitting. Which is highly encouraged to get the mucus up and out of the lungs, more blood than mucus started to show up. This at first was not alarming as coughing for great lengthens at a time and with great veracity can cause a few broken blood vessels. In the amount of 2 hours I had coughed up a lot of blood and began to become very concerned. Concerned enough to place a call to my doctor.

My first level of response is always to call my doctor to find out if they feel going to urgent care or the ER is necessary. Typically, a trip to either is fruitless as they really don't know how to treat such a complicated disease unless its immediately life-threatening. After a few discussions, Dr. Cohen recommended coming into his clinic to be seen.

I immediately rushed out the door to make the 45 minutes drive to his office. Upon arrival he had a preliminary diagnoses of Pulmonary Hemoptysis, which was only further confirmed after his physical evaluation. There a different levels of Pulmonary Hemoptysis, which are characterized by the amount of blood being brought up and the circumstances surrounding the current health of the patient. In my case, Dr. Cohen felt that antibiotics were necessary and since I had literally just gotten off an oral 14-day prescription of Cipro, a stay in the hospital was warranted. Ugh!

Honestly, I was not surprised. My biggest concern was that I hadn't packed anything prior to rushing out the door. You see, I have a particular set of things that always accompany me to the hospital. Books, pillow, blanket, my own pj's, sports bra (this helps when male nurses/doctors have to evaluate the lungs and with modesty), Bible and my UGG boots for walking around the halls. Nurses always get a kick out of my room, as I make it as homey as possible. I was worried about getting all this stuff. Silly, yes, but it helps ease anxieties making me comfortable when I am alone and is my saving grace during difficult times. I immediately called the hubbs to begin arranging the logistics of my stay. Hubbs works for his parents for which I am grateful. Is step-dad was able fill-in for him for the remaining part of the work day so that he could accompany during the check-in process.

B and I checked in to the hospital about 1pm. Check-in can be the worst part of the entire stay. I had to have a Picc Line placed, x-rays, blood work, etc...... I hate Picc Lines. They freak me out. I have to have to take anxiety medication for it or I cry uncontrollably during the procedure. It's really all psychological as they do a great job in numbing the area and I feel no pain. Once they have the line placed they immediately begin infusing two different anitibiotics. The first was Zosyn and the second is Tobramycin to treat Pseudomonas which are the underlying cause of the Hemoptysis.

Picc Line preparations-anyone recognize what t-shirt I am wearing?

At first dosing of each antibiotic things appeared to be going smoothly. I was a bit tired but other than that I felt pretty good. B and I decided it was safe for him to return home to get a good nights sleep and to pack me some comforts for home. My mother was going to take Friday off to be with me so that B could finish out the work week (we need the $$$, sadly). B left around 8pm to make the 1hr trek home. I fell asleep and awoke around 11pm and would not sleep again for 24hrs.

When I woke I was shivering had a fever and my body hurt. The nurses pilled on about 3 or 4 warm blankets and gave me Tylenol. The Tylenol had no affect and shortly after I began vomiting. My joints began to swell and the on-call doctor probably had no idea what to do for me. They gave me Vicodin for the pain and anti-naseau med's thru my Picc line, all in addition to my continued antibiotic regimen. The best description I can give and did give was that I felt like I was being poisoned.

The battle continued all night. All night I was shivering uncontrollably causing my muscles to ache my joints to become swollen and painful. I was sweating from the fever and I was alone! I had no comforts of home since I didn't have a chance to pack and it was in the middle of night.

Hopelessness threatened me.....

~Doodlin'