Kickin' Grass

"Learn a lesson from your dog- no matter what life brings you, kick some grass over that shit and move on." ~ Unknown

Imagine that you have an infection, and the only oral medications on the market that can help you fight off that infection are Levofloxacin and Ciprofloxacin. Now, imagine being told that those medications will not work for you. How do you feel?

That is what my doctor's nurse told me on the phone today. She mentioned that the next time I get hit with a Cystic Fibrosis lung infection, the only thing that could help me are a combination of several intravenous medications. Not what I wanted to hear while this cold of mine is working hard to spread to my lungs.

I've had many peripheral lines put in my arm, a port, and hospitalizations; it doesn't get any easier over time. I never want to be the "sick girl." I feel that I'm capable of much more than a title like that implies. A feeling that "I'm bigger than my body gives me credit for."

Unfortunately, I'm not feeling my best today. My body aches, I feel hot/cold/feverish, and I can't stop coughing. All the coughing is causing me to throw up frequently, which is great fun. At this time, all I keep thinking is that it's not time for my body to just surrender - to go on IV antibiotics, or spend time in the hospital.

Cystic Fibrosis is like living with the flu every day. What did you feel like the last time you had a really bad flu? That is my everyday. After living with me for several years, my old college roommate and best friend, Christina, used that flu analogy after seeing what my everyday health regimen truly looked like. I've often used that analogy when speaking publicly about Cystic Fibrosis. The bare definition of the disease is sometimes insufficient to explain what living with the disease is like, and just how aggressive CF is in its quest to slowly destroy the body from the inside. Constant congestion, coughing, tissues, fevers, throwing up, digestive issues, body aches, and the inability to breathe clearly are only the basic symptoms.

I have so much that I want to do in the coming months, and I don't want to sit on the sidelines. I have the Great Strides walk that I so desperately want to attend, a public speaking engagement to spread awareness about CF, yoga classes to enjoy, makeup lessons that I want to teach, getting together with friends, and so much more. They sound simple enough, these little moments that I don't want CF to take away from me. So, it's hard to hear when a nurse tells you that no oral antibiotics will help you. There are no easy answers to Cystic Fibrosis - I get it. I'm trying my hardest to fight this with the limited resources I have. I am surrounded by lots of water, peppermint tea, vitamins, tissues, enzymes, and my daily medications, all while attempting hardcore airway clearance. Wishing the mucus waterfall would end. Just waiting for that magic pill.

Rooted, Strong, and Growing

"Meditate. Live purely. Be quiet. Do your work with mastery. Like the moon, come out from behind the clouds! Shine." ~Buddha

I have become very open minded over the years when it comes to my health while trying to combat Cystic Fibrosis. I tend to mix a little of Western medicine, Eastern medicine, and holistic treatments to my daily health regimen in hopes for the best health outcome possible.

During my yoga practice, I've learned about Chakras being centers of energy which are located on the midline of the body. Within the body exist a series of minor and major energy centers called chakras. The word chakra is Sanskrit for "wheel" or "disk". Each of the seven major chakras has its own distinct character and relates to a unique aspect of our being. The chakras correlate to levels of consciousness, body functions, colors, elements, sounds, and much more. The blockage or energetic dysfunction in the chakras is believed to give rise to physiological, psychological, emotional, and spiritual disorders. During my yoga practice, I try to align my chakras and balance my body through different yoga poses.

While this may sound a little outside of the box, I'm willing to try anything to improve my health and strengthen my lungs in order to help me breathe easier. With the knowledge of chakra colors on the brain this morning, I picked out a bright red shirt to wear at my doctors appointment. Red symbolizes the Root Chaka. I knew I wanted to be grounded while being present in the here and now. I wanted to feel confident when doing my lung function test, to know  that I had the ability to succeed. I was hoping that the red would boost my energy center which, in turn, would help me have better lung function results.

I love my lungs and was thankful for my 55% FEV1 lung function results today. I am aware that normal is 100%, but I am grateful that my lungs are still working and are still remaining unstoppable. At my last doctor's appointment, I was at 52% FEV1 lung function and I was elated to hear that my lung function had improved since my last visit. I believe that yoga, pole fitness, and weight training each day is paying off!

I choose to be unstoppable. I am bigger than my concerns and worries. The strength of others inspires me daily. I will continue to focus on my goals because I believe I am capable of much more! As I continue to breathe, I continue to hope.

 

  

Lotus Flower

"Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible." ~Saint Francis of Assisi

I've learned that lotus flowers are symbolic, inspiring people to continue striving through difficulties and to show their best part to the outside world, no matter how bad the circumstances may be. The lotus flower grows from the murky darkness at the bottom of the pond, emerging pure and clean. It is said to symbolize beauty and light. The plant's stalk is easy to bend in two, but it is very hard to break. Resilient in its own unique way. When I think of the lotus flower, I imagine perseverance. The lotus flower reminds me that life is fragile, everyone has their own obstacles in life and can find light even after the darkness has faded. I believe that it is important to always remember that.

We are continuously driven to edit and revise our daily lives. We make sure to prepare for the day, and revise as we see fit, each day leading to new growth and development. I woke up craving some positive juju, so I've decided to take an Aroma Yoga class today, I know it will be just what my body needs.

Pump You Up!

"Life is not a dress rehearsal. Stop practicing what you're going to do and just go do it. In one bold stroke you can transform today." ~Marilyn Grey

At my last doctors appointment, my FEV1 was at 52%. My doctor had suggested that if I increase my BMI, it could help increase my lung function. I have to admit, I've lost a lot of muscle and I'm often fatigued by the lack of oxygen going through my bloodstream. However, if I'm going to succeed, I have to push myself. Arnold Schwarzenegger's got nothing on me!

I'm proud to say that I've been working out 4 days a week since January. My exercise schedule has consisted of weight training, pole dancing, and yoga. Odd combination for sure, but I'm enjoying the diversity during the week! Yoga has continued to be my favorite form of exercise. As cheesy as it sounds, when I'm on my green yoga mat, the world just melts away and any stress that I may have in the day just disappears. Yoga is often portrayed as a Hindu spiritual and ascetic discipline, a part of which, including breath control, simple meditation, and the adoption of specific bodily postures, is widely practiced for health and relaxation. Exercise is the focal point in my daily regimen, I am determined to strengthen my lungs and body, improve my breathing capacity, achieve a sense of calm, a state of relaxation - overall, to enhance my quality of life. I believe that yoga combined with other forms of exercise will help me accomplish just that.

To increase my muscle mass, I've gone back to the basics, like in Child's Pose during a Yoga class. This is symbolic in a way because like a child, I have to start from scratch, break down my muscle, and watch it grow slowly over time.  Even though I'm not seeing results yet, I feel stronger.  

Child's Pose: Start on your hands and knees. Sit your tailbone back towards your heels, coming to sit on your calves. Bend your upper body forward, resting your chest on your thighs, your forehead on the floor, and your arms outstretched forward. Child's Pose is in fact a restorative yoga position that induces deep relaxation and even stimulates the pituitary gland. It's true. As soon as my forehead hits the mat, I feel centered, and experience a sense of peace. It's no wonder why a child resorts to this position after throwing a temper tantrum.

According to Sri Dharma Mittra, there are at least 1,300 total variations of yoga positions. Only 1,299 more positions to master as I build my breath and strength. 

Spring Forward & Bloom

"Flowers don't worry about how they're going to bloom. They just open up and turn toward the light and that makes them beautiful." ~Jim Carrey

46% FEV1 was the verdict, after I huffed my heart out during my pulmonary function test. Maybe I'm just too much of an overachiever at heart, but I always hope for higher numbers. Still, I felt mostly content with these results because I know that it can always be worse. My daily health regimen has been like a respiratory bootcamp, consisting of 2 hours of manual hand-clapping on my chest by a respiratory therapist, 5 breathing treatments, an hour of exercise with Aiden (my fuzzy son), 40 minutes of Vesting, and frequently using my G5 Percussor for airway clearance. One would hope that after constantly coughing and moving the goodies out, the mucus would eventually hold up the white flag and surrender. But, after 28 years of fighting Cystic Fibrosis, I've learned that my arch-nemesis is relentless!

Recently, I was honored and humbled by the opportunity to share my personal story living with Cystic Fibrosis at a Sequenom conference. During the Q&A session after my speech, an audience member asked, "Where do you find the time to do other activities besides your health?" I explained that it's a big challenge to find balance throughout the day. The doctors ask a lot from Cystic Fibrosis patients, and our daily health regimen is extremely involved as a result. Nevertheless, Cystic Fibrosis is what I have; it's not who I am.  

Another question that an audience member asked, "Do you think your lung function will ever improve?" My answer wasn't complicated, but is somewhat difficult to explain. I often find myself clinging to hope. I've been told that my lungs are damaged by mucus which continues to clog my airways, and that I cannot mend what the mucus has destroyed over the years. This mucus has managed to create holes in my lungs, destroying the cilia in my airways and causing my airflow to be diminished. The picture that has been painted in my mind is that my lungs are like a wasteland - damaged and scarred. This is a haunting image, to be sure, but I find comfort in knowing that, even in the darkest of places, light can exist. Even in the harshest environments, life can flourish. And even from the cracks in the pavement, a flower can bloom. I think it's important to always remember that.

   

Bungee Cord

“When you come to the edge of all the light you know, and are about to step off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on or you will be taught how to fly.” ~Barbara J. Winter

In my last post, I wrote about my desire to find solid ground and above all, strength again. I wanted to update my blog to discuss what my journey has been like these past 6 months. Finally, I have found something solid to stand on, and I no longer feel like I'm bouncing up and down on a bungee cord. Let me explain: when Cystic Fibrosis is really kicking my booty, I sometimes feel helpless, like I'm suspended in mid-air by a bungee cord and plummeting toward the ground. In truth, I never really know if I'm going to hit the dirt, or bounce back and rise toward the sky again. It seems that each time I get sick and fall, the cord stretches a little more, and I'm left with that awful feeling of uncertainty. What if I hit the ground? What if this is it? Fortunately for me, I've always managed to bounce back after each drop.

I have been told many times over that exercise can be a huge benefit for the lungs of Cystic Fibrosis patients. Exercise helps to push air deep within the lungs, expanding them, and forcing mucus secretions out. Also, exercise can serve to strengthen the immune system. When I was feeling my worst and could barely breathe, my fiance helped me to get on the treadmill in our bedroom everyday. My lungs were on fire, burning with every step, but Hunter kept assuring me that it would get easier. He had enough faith for both of us. I'm not going to lie - just doing 2 minutes made my lungs hurt like hell, and exercising took a lot out of me. I threw up, I cried, but I made a promise to keep exercising a little more each day. In a way, maybe I did not want to let him down, and above all, myself. I became more focused, repeating the words over and over to myself, "it doesn't matter how fast you go, just keep going." With The Fray blasting on my MP3 player, my little 2-minute walk turned into a 5-minute walk, and in time, that 5-minute walk eventually became an hour-long cardio session. Months later, I found myself laughing through tears - not because of the pain - but because I was so relieved that I was able to do it. That slow, painful 2-minute walk that had me on the verge of tears was now a full-blown hour-long workout that left me feeling like Superwoman! I was ecstatic that I had come so far, and I never wanted to go back to feeling like I did just months prior. Hearing The Fray's song, "Run for Your Life," along with the words of my fiance, really helped light a fire inside me. I am so thankful to have Hunter's love, patience, and support. He makes me a better person everyday.

My pulmonary function test went from 36% FEV1 to 57% FEV1 in April. I was super excited, and exercise has continued to be a part of my daily regimen since then. I have been feeling like a badass, inside and out!

Come April, I had completed 3 miles on my treadmill! :)

Also, I have been going to The Salt Room in Orlando twice a week. The Salt Room is a more holistic way of treating my CF lungs. Dry, pharmaceutical grade salt is pumped into a room during a 45-minute session. Salt naturally has antibacterial properties, and I'm able to get tons of secretions up during my sessions. The Salt Room is like a car wash for my lungs! In patients with Cystic Fibrosis, our salt channels are messed up, causing abnormally thick mucus to build up in the airways of our lungs. Scientifically speaking, Cystic Fibrosis (CF) is caused by the loss of functional CFTR Cl-channels on a cellular level. This defect disrupts salt and liquid movement in the airways of the lungs. The thick mucus makes it hard to breathe and leads to infections, lung damage, and clogged airways, as well as early death. The Salt Room has helped me to sleep better, get up more secretions easier, and has helped with my allergies as well. I'm hooked! :)

The room is covered in salt! Yum!

 

Finding Solid Ground

"A man who removes a mountain begins by carrying away small stones." ~Chinese Proverb

I was walking on unsteady ground last year, praying that 2012 would bring better days. Over the course of these last few months, I've undergone three surgeries, two trips to the E.R., three months of intravenous antibiotics, and two hospitalizations overall. But through it all, I think I've learned something important. When we find ourselves standing on unstable soil - as we all do from time to time - it's only natural that our first instinct is to try and find that familiar land that once lay firmly under our feet. So, what do we do? We dig. In search of solid ground, we dig frantically - sometimes using our hands, sometimes a shovel. And sometimes, we even resort to using the heavy machinery, like a bulldozer. But regardless of the tools we use, there are times when no matter how far we dig, we find that the soil is still unstable. Where are we then? Standing in a hole that we created all by ourselves. And unfortunately, climbing out is never as easy as it looks.

In November 2011, I thought all the bumps in my road were behind me, but they weren't. I've learned firsthand that complications and symptoms of Cystic Fibrosis can be unpredictable. There have been days where I have not been able to breathe on my own, and have had to rely on the use of oxygen, throughout the day and night. My days have been much like a roller coaster, both physically and mentally; feeling fine one day, and not able to crawl out of bed the next day. I've had days where I could hardly walk from my room to the front door, which left me feeling that I was no longer capable of fending off my disease. Was it winning? Was I reaching the end of my rope? Or did I need to remain vigilant and simply have more faith that my daily health regimen would prevail in time? My health had been number one on my "to do list," everyday, for a long time now - four breathing machines in the morning, two in the afternoon, three breathing machines at night, inhalers, countless pills each and every day, along with my G5 and Vest physiotherapy. I was working hard, and I was growing tired of all the roller coaster's loops, turns, and falls.

I tried to become friends with my new port in the months of September, October, and November, but the last straw was when my heart started to hurt. By the time December rolled around, I was ready to have this port taken out as soon as possible. A port might work for many people, but my body didn't have a great response to it. My favorite surgeon was booked, so I had the port taken out on December 9th, by a surgeon I did not know. I just knew that I wanted it out ASAP and I felt as though I could trust any surgeon to do a great job. Unfortunately, it was an awful experience. Many medications in surgery can affect the lungs in a negative way, causing even more complications. Also, I have a lot of contact allergies that all the nurses and doctors taking part in my procedures need to be made aware of beforehand. Therefore, I made it a point to tell them, so that things would go smoothly.

When the port was placed in my chest in September, I was draped for surgery first, spoke with the surgeon who was performing the procedure, and then, when all was ready, I was sedated with Fentanyl. I was hoping that the same would happen when the port was removed, but unfortunately for me, this particular hospital's radiology team was a nightmare. The nurse drugged me without my consent. I was pleading with her to wait, at least until I was draped for surgery, but she refused. I remember lying there feeling helpless and uncomfortable, realizing that I didn't even have a say in my own health care at that moment. I wanted to run for the door, but I was hooked up to an I.V. on a gurney and couldn't move because the drug was already taking affect. At that point, no one was there in the room except for me, the nurse that drugged me without my consent, and a tech in the side-room who was still gathering materials for the surgery. It was truly a traumatizing experience that really left me not wanting to be put through another surgery anytime soon. I will never go back to that hospital again. Looking back, I wish I would have had my port removed at Winter Park's hospital, where I had it placed, because the radiology team there is the best. That chapter is closed, now on to the next.

The following day was my 27th Birthday Bash. My 27th Birthday Bash was a happy day for me. The theme was 50's housewives and I did not want to cancel the party because I needed to be around my favorites, I needed to laugh, and I needed to have a day to enjoy fully without complications. I am blessed to have the most amazing friends. Some of my best friends I grew up with, and others I met in college. It is funny how most of them became nurses, psychologists, and physical therapists....and I...I am Quasimodo, haha. They helped to make my Birthday celebration even more extra special.








The night before my birthday bash, I noticed that I had started forming a rash around the surgical sight. My allergic reactions never happen immediately. Most of my contact allergy reactions are gradual. The only reason for me to break out in a rash is if during surgery, someone accidentally uses something that I am allergic to. I had printed out a sheet stating all my contact allergies, including a wrist band with most of that information printed on it, but these idiots still managed to screw up. It was a localized rash that was only present on my chest at first, but eventually spread to my neck. I've had a reaction like this before, during my prior PICC line placements, and knew that it was only going to continue to get worse until I would have to take a trip to the E.R. I did not want to go to the hospital. That was the last place I wanted to be. I really wanted the Cortisone cream and Benadryl tablets to work, but as the hours passed and the clock turned to 3:00 am, it was a domino effect that would eventually lead to me spending 8 hours at the E.R.

The beginning of my gradual allergic reaction with little baby rashy bumps:

"Full blown, it's bad, time to go to the E.R." allergic reaction:

At the E.R. they made me do an x-ray, blood work, and pee in a cup. They pumped Benedryl, Steroids, and Pepcid through an I.V. The rash was so severe that it would not fully go away. When my I.V. vein blew, they decided to give me a shot of Benedryl in my arm. The medication going through the I.V. helped to relieve the feeling that I was rolling around in an ant pile, but the rash was still there. I came in specifically wanting to only treat my rash, and the doctors in the E.R. wanted to admit me into the hospital to start intravenous antibiotics immediately. Their reasoning was that I sounded congested in my chest. I couldn't believe what I was hearing. A CF patient with congestion? You don't say! I refused treatment of intravenous antibiotics and I just wanted to go home. I had spent 3 months on intravenous antibiotics by that time, and there was simply no way that I was going to start a whole new cycle of I.V. antibiotics. I felt as though I needed to consult with my Cystic Fibrosis doctor in Palm Beach before I signed up for any more surgeries or procedures. I was overcooked and DONE!

Exhausted at the E.R.:

Two days later, a nurse from my old doctor's office in Orlando called, wanting to inform me of my blood and urine results that were taken just recently in the E.R. My blood and urine is always normal so I was quite concerned why she felt the need to call me. She informed me that I had Staph in my blood and urine, and that I needed to come to the hospital immediately to be treated with Cubicin intravenously for 2 weeks. At that moment, I shut down. Staph in the blood can be fatal. Thank goodness for Hunter and my mom because I was completely frozen and numb. I needed to shut off my brain and they immediately took the role of investigators and problem solvers. I needed time to recharge and regain my composure.

My mom called my Cystic Fibrosis doctor in Palm Beach to inform him of what had recently occurred and to get him in the loop. He requested that I visit my local Quest Diagnostics lab as soon as possible to get blood work and a urine test done to confirm the Orlando hospital's findings. He believed that those results might have been false-positives because I showed no actual symptoms of a Staph infection. Still, we needed to be certain. Ultimately, the results showed that no Staph was present in my blood or urine. I was extremely relieved! How could someone make that error?

At the end of December, I started to feel congested again and I ran a fever on New Year's of 2012. The last couple of New Years I've been sick, so I knew that it was going to be a television and cuddle type of night with the love of my life. I am so lucky to have Hunter as my fiance. He is the best thing that has ever happened to me. We have been through everything together and he truly is my sanctuary.

In the midst of everything, I noticed that my port incision was not quite healing properly. When the port was put in, the incision looked beautiful. However, when the port was taken out the incision healing process was not looking so good.

Dissolvable stitches coming out of the incision:

There was no way I was going back to the hospital that removed my port, so I made the decision to go to Winter Park, in hopes that their radiology team could better treat my wound. I thought that it might be gauze stuck in the wound, peaking out of the incision. The radiology team there knows me well, and paged my favorite surgeon, Dr. Mancilla, to look at it. I was so relieved that he was there because he normally travels from hospital to hospital. Thank goodness! I needed luck on my side, and I definitely took it as a sign that other good things were coming my way. He explained that the white part that I was seeing was one of the stitches surfacing. I did not understand why that would happen because I thought dissolvable stitches were used. When I first had my port placed, the stitches dissolved on their own, and I wondered why the stitches used for the port removal procedure had not dissolved. Dr. Mancilla explained that the resident that had performed my port removal surgery made the stitches too superficial and they ended up being pushed out by the body. He removed the stitches and made the incision beautiful and smooth. My path has been shaky, cracked, and rough, but like my scar, I want things to be smoother for me.

My smooth scar after Dr. Mancilla pulled the stitches out:

I've now been battling a lung infection since New Year's 2012. I'm on oral Bactrim and inhaled Tobramycin, and I am slowly trying to find something solid to stand on again. I don't want more intravenous antibiotics or hospitalizations any time soon. My body needs to realize that it can be strong on its own, like it once was. Without the use of toxic antibiotics streaming through my veins, I need it to be strong like the ground where I once stood so firmly.

"Fall seven times and stand up eight." ~Japanese Proverb