Golf Balls

I'm finally home. Happy. Stress-free. Surrounded by my two loves (my boyfriend and dog). I'm able to finish up my I.V. therapy at home and get the best sleep in my own bed. I couldn't ask for anything more.

A couple of days ago I read the best chain mail. I never really forward the mail out but I decided it was worthy enough to share.

The Mayonnaise Jar

When things in your life seem almost too much to handle,
When 24 hours in a day is not enough;
remember the mayonnaise jar and 2 cups of coffee.

A professor stood before his philosophy class
and had some items in front of him.

When the class began, wordlessly,
he picked up a very large and empty mayonnaise jar
and start to fill it with golf balls.

He then asked the students if the jar was full.
They agreed that it was.

The professor then picked up a box of pebbles and poured
it into the jar. He shook the jar lightly.
The pebbles rolled into the open areas between the golf balls.
He then asked the students again
if the jar was full. They agreed it was.

The professor next picked up a box of sand
and poured it into the jar. Of course, the sand filled up everything else
He asked once more if the jar was full. The students responded
With an unanimous 'yes.'

The professor then produced two cups of coffee from under the table
and poured the entire contents into the jar, effectively
filling the empty space between the sand.
The students laughed.

'Now,' said the professor, as the laughter subsided,
'I want you to recognize that this jar represents your life.

The golf balls are the important things - God, family,
children, health, friends, and favorite passions
Things that if everything else was lost
and only they remained, your life would still be full.

The pebbles are the things that matter like your job, house, and car.

The sand is everything else --
The small stuff.

'If you put the sand into the jar first,' he continued,
'there is no room for the pebbles or the golf balls.
The same goes for life.

If you spend all your time and energy on the small stuff,
You will never have room for the things that are
important to you.

So...

Pay attention to the things that are critical to your happiness.
Play with your children.
Take time to get medical checkups.
Take your partner out to dinner.

There will always be time
to clean the house and fix the dripping tap.

'Take care of the golf balls first --
The things that really matter.
Set your priorities. The rest is just sand.'

One of the students raised her hand
and inquired what the coffee represented.

The professor smiled.

'I'm glad you asked'.

It just goes to show you that no matter how full your life may seem,
there's always room for a couple of cups of coffee with a friend.'

Better Than This

As I think back 16 days ago, I realize that a lot has happened during my stay here at the University of Miami hospital. In a nutshell it has been constant work, work, work. My goal of trying to get my lung function back up has been a continuous fight while arm wrestling with the infection that has caused trouble in my lungs. My stay has consisted of hours of breathing treatments each day, chest physiotherapy(40 minutes of vest and an hour of manual chest PT each day), lab work, x-rays, Pulmonary Function Tests, and I.V. therapy. At this point I'm running on empty. But I know if I give up, I won't get anywhere.

As I rewind back to the first week I felt a little nervous because I was living in a new place here in Miami and had to find a new doctor. Fortunately, I found Dr. Light. His name had a nice ring to it and he had a British accent. I think he won me over with that haha. He informed me that he had been treating CF for 40 years and I could tell he was very smart. All I could think of was thank goodness he has been doing this for 40 years and I have been doing this for 25...we are going to be a great team! My first impression of him was great because of his positive demeanor. I explained to him that I'm no slacker when it comes to my health. I work really hard and when CF knocks me down, I need him to bring the big guns to help me get back up. I also loved during our first conversations he wanted me to set a goal. I've always wanted to run a marathon...well maybe start small and do a half marathon. :) And Dr. Light was positive that I could do it when my lung function got back up but it would take a lot of work and time. Everyone has challenges, it's how we deal with them that makes us either rise or fall.

They could not get a PICC line in my right arm which led to lots of holes and bruises:


Luckily success on my left arm...my Double Lumen Power PICC Solo, only requires saline flushes for long term I.V. use:


The first guns that Dr. Light pulled from his sleeve was Tobramycin(once a day) via I.V. and Zosyn every 6 hours via I.V. During that first week I felt like I was getting worse. And truly while on I.V. antibiotics my body always goes through the worst before it gets better. After the first week, I did PFT's and my lung function was down another two points at 44% FEV1. I told him that I wasn't discouraged and gave a BIG pft to my PFT's. My mind at this point was stronger then my body and I was holding on strongly to that. The stairs being my biggest barricade, I knew that if my lungs were going to become stronger I had to start with that. Putting one foot in front of the other I kept on telling myself it's only up from here and I can make it happen.

The second guns that Dr. Light pulled from his sleeve was Gentamycin(once a day) via I.V. and Imepenim(every 6 hours) via I.V. because he wanted something a little stronger after seeing my PFT results. That week was rough because I had noticed changes in my body feeling weaker then ever. Throwing up a lot from the I.V. meds going through my veins, weakness, and loss of appetite. I also noticed that when my boyfriend came to visit and we would go walking I felt like I couldn't breathe and I had to stop a few times to catch my breath. I felt like I was running in place and my heart was going to jump out of my chest but I wasn't running at all. We had just thought the medicine was much stronger this time around and that my body was getting hit hard. Little did we know that the reaction would intensify leading to two EKG's, a chest x-ray, not being able to breath on room air, being put on oxygen to breath, and having tachycardia. Unfortunately, during this time my doctor was out of town, and I had 3 brainless doctors working the floor during that week and they didn't know what was causing this reaction. Dur dur dur...if you google the medicine it shows that the antibiotics can cause adverse reactions such as not being able to breathe and tachycardia. I was in shock that the doctors did not have a clue and did not give a proper diagnosis. And it took my brilliant mom, me, and Hunter to figure it out. We knew immediately that it was the medicine and we had to tell the doctors to stop the I.V. medication going through my veins right away. When my doctor was informed he knew immediately as well that it was probably the imepenim that caused this type of reaction to occur and that my mom, me, and hunter did the right thing by telling the doctors to stop the I.V. meds.

Doctors FAIL diagnosis and FAILED words of wisdom that week:
1. "your lungs are filling up with water"...umm no that is mucus you see on my chest x-ray.
2. "you need to stop drinking so much water and be put on a diuretic"...ehhh no if I stop drinking water I will become dehydrated and hell no you are not putting me on a diuretic
3. chest x-ray is performed..."you need to have another chest x-ray two hours later"...umm no what will that prove and what is the logic behind that?
4. "you need to relax and take deep breaths and you will start to feel better"...umm really I'm very calm right now thank you very much even with the situation, it's not anxiety...seriously something is wrong here.
5. "You are walking too much you need to stop"..umm no exercise is good for the lungs and will help me to get better faster.
6. "This is normal it's your CF"...okay who are you and you can go sit in the corner...you will not pass GO or collect 200 dollars.

Overall, thank goodness I didn't listen to them because the situation could have gotten worse if I would have said yes to there stupid comments. I knew that this was not normal, it wasn't my CF causing the tachycardia and not being able to breath...it was an adverse affect from the I.V. medicine and my body just didn't like the drug and reacted in defense mode.

This week, week 3, my doctor is back in town what a relief. Lung function test down two more points to 42% FEV1. After looking at my chart and doctors notes he apologized for the stupid doctors that were on the floor. New guns and hopefully the final guns will be Ceftazadime(every 12 hours) via I.V. and Tobramycin(once a day) via I.V. I know that my body has been on a roller coaster ride and I've had a few minor set backs. Dr. Light knows that we still have a lot of work to do and I'm ready to put in the time if he is behind me. My mind continues to be strong focusing on the fact that things are going to get better and my body and lungs will eventually catch up. Because I have to believe that there is more than this...that I can be better than this.

Lung Workout

I had PFT's(pulmonary function testing) this morning. After a night of breathing treatments and breathing machines, I decided to do some breathing exercises by singing last night. Working hard on my lungs! They don't let me rest, I won't let them rest!

It was my way of preparing for today. Today's results: Numbers are down to 46% FEV1. Big bummer to hear that news today...grrr! Especially when I have been working so hard to get my lung function up.

"You can spend your whole life building
Something from nothin'
One storm can come and blow it all away
Build it anyway"

Let's just say I will continue to build...

Blue Cap and Gown

Throughout my life I have had to go through surgeries from complications of Cystic Fibrosis. Some of these surgeries have been a meconium ileus, endoscopic sinus surgery to remove polyps and congestion, numerous peripheral inserted catheters to fight off infections in the lungs, and a bronchospcopy. Cystic Fibrosis is a multiorgan disease causing problems not just in the lungs and the digestive system but can cause trouble in other organs too. Not only do CFer's have to deal with CF complications but "normal" complications occur as well such as wisdom teeth being pulled and other "common surgeries."

Well, as a woman, I was having some abnormal menstrual cycles and lots of spotting in between periods. I didn't know if these problems were stemming from CF or just a normal girl issue that I had to try to get back to "normal." My OBGYN after years of switching my birth control had decided that she should perform a hysteroscopy where a camera could go up and look around to see if everything looked good. Goody just the thing that I wanted to sign up for, right?!

During the hysteroscopy, my doctor had found a small part of thick tissue that she believed really had no need for being there and wanted to clip it out in her office. She thought that it could be causing my spotting in between periods. I thought Aha!...an answer to my problems, lets do it! I was all for it because she had already busted into freaking Alcatraz with a camera, went up into my cervix, the only thing left was to loot the goodies and leave haha. I was having severe cramping during the hysteroscopy and wanted the experience to be over as soon as possible! She realized that the clippers to cut the tissue out was not sanitized and to my dismay wanted me to make another appointment and do the hysteroscopy again. Who would ever want to sign up for that again? I decided that maybe it would be better to put me under so I wouldn't be in so much pain. And it could be a 1,2,3 procedure.

Boy was I wrong! This Thursday I went in at 7:45 am to prep for my 9:45 am hysteroscopy surgery. I've never had any problems getting put under general anesthesia through the vein and spoke with the anesthesiologist about my past surgeries and what I was allergic to. I'm a bit complicated because my skin is sensitive to tegaderm dressing, chloroprep, and betadine only under IV dressing. The anesthesiologist from the beginning had major concerns because I have Cystic Fibrosis. He talked to me about my options asking if I wanted to do an epideral anesthesia which only made me more nervous about the surgery. I didn't want to do any of his options except for what I was used to which was general anesthesia through the vein. All I could think of was oh my gosh he knows nothing about Cystic Fibrosis and I'm going to not have a good experience. I was extremely nervous wondering if I had made the right decision because I didn't have any of my pulmonary doctors that were there to point my OBGYN doctor and the anesthesiologist in the right direction and give them details of my specific CF case.

I was trying to give as much detail as possible about myself letting them know that when I sleep my O2 stats drop due to lung damage caused by Cystic Fibrosis. Well even "normal" people have a drop in O2 stats while sleeping but mine is a bigger drop. And that my persistent coughing is normal because my airways are always blocked by mucus caused by CF. Throughout my waiting nurses kept on asking, "what's with that cough" and telling me that I shouldn't be going into surgery sick. I felt like a broken record constantly saying I have Cystic Fibrosis and I cough, it's normal that I sound like this. Some understood immediately after I had said I have CF. But still, I would never say that to someone! Everyone should live by not judging a book by it's cover. You never know what someone is going through on the inside.

Finally, it was surgery time! The anesthesiologist asked if I was ready for my mixed cocktail and I told him only if there was sugar on the rim. And all I heard as the syringe of medicine was put into my vein was, one for nausea, one for pain and one for....I think the last one was the goodnight medicine. I was out in two seconds. I woke up 2 hours later with a girl holding an oxygen mask to my face pumping oxygen into my chest. And I was having a coughing fit. I asked if I could please have a cannula for my oxygen instead of the mask because it was causing my asthma to flare up. The anesthesiologist looked worried and came over to my bedside to ask if I was okay. I told him yes as the nurse by my bed kept telling me to take deep breaths. They needed to make sure my oxygen level had gone back to where it was before surgery. My throat was really sore and it was hard for me to swallow. I had found out that during surgery, I started having a spasm while I was under anesthesia and kept on coughing. He told me that I was in a tilted position during the surgery with my bottom half up and my head towards the floor. What idiots! Why would they position me like that! If you put me in a postural drainage position, of course I'm going to cough. All my mucus was probably wanting to come up and out because of my position and I couldn't cough it out because I was under anesthesia. If I wasn't so drugged up I think I would have verbally killed him.

Also, I found out that they had to intubate me and suction up mucus because I couldn't stop coughing during the procedure. Talk about scary! It makes me never want to get put under anesthesia ever again. The next morning after surgery, my whole body hurt. The only body part that did not hurt was my uterus, where my surgery was performed. My shoulders, neck, upper abs, throat, cheeks, mouth, head, and back were killing me. I asked the hospital if the aches were normal and they said that usually people will be sore when they are intubated because the surgeons have to push the patients head back to get the tube device in. As for my abs, I was thinking they probably freaked out when I started to cough and kept on lifting my body up and down to try to get me more oxygen. I was probably like a small ragdoll being tossed around. As for now, I'm resting my body and hoping no blue cap and gown for awhile.

Beautiful Lengths

About a year ago, I got the urge to grow out my hair and donate it. I made a goal to grow it out 10 inches long. I knew that I would probably turn into a woman who looked as though she had come from the jungle but at the same time I wanted to make a difference and hopefully make someone feel good at the same time by just doing a simple gesture of letting my hair grow longer.

I looked into different organizations and I picked Pantene Beautiful Lengths which encourages women and men to grow, cut, and donate their hair to make real hair wigs for women who have lost their hair due to cancer treatments. A recent study revealed that nearly 60 percent of women consider hair loss the most dreaded side effect they face when undergoing chemotherapy. And real-hair wigs can cost as much as $1200 and are often only partially covered by health insurance. It takes 6 ponytails to make one wig. I'd like to think that my ponytail was the 6th piece of the puzzle that helped to make someone happy and feel a little better both inside and out.

My New Look! :)

Cystic Fibrosis PSA shoot

Central Florida's TV27 News talked about the upcoming Great Strides Walks for Cystic Fibrosis. Taking steps to help make C.F. stand for Cure Found! For those that read this, if you're interested in finding a walk in your local area please go to: http://www.cff.org/great_strides

Team Jen 2010

On April 11th, 2010 my team and I went to the Great Strides Walk for Cystic Fibrosis in Orlando, Florida. Great Strides is a nationwide fund raising event held all over the United States in different locations. It was my third year coming out with my team at the UCF walk in Orlando and I was taken back by all the support from my friends, family, and even strangers that were there to help expand the quality of life for those with CF and find a cure. My team and I were able to raise $5,163 dollars in the fight to make CF stand for Cure Found and I could not have done it without the help of others. Words alone can not express how thankful and grateful I am to Team Jen, my friends, family, and even strangers for your support and donations.