Beauty

“I don’t like standard beauty – there is no beauty without strangeness.” ~Karl Lagerfeld

As a makeup artist, I've learned that we are our biggest critics when it comes to beauty, but, in my opinion anyway, true beauty can be found in a person's attitude. Scars and wrinkles should not be viewed as flaws, but rather as beauty marks or stories that make each person unique. Each marking on my body illustrates a different chapter of my life. I would not be where I am today without my scars, freckles, "lines of intelligence" (as Bobbi Brown would say), or anything else you may find on my body. My port is my newest beauty mark to add to the collection, and it is healing nicely.

My beautiful booboo is healing. :)

Patience

"Slow down, you crazy child and take the phone off the hook and disappear for awhile it's all right, you can afford to lose a day or two
When will you realize, Vienna waits for you?" ~Billy Joel

I'm not throwing up gang signs lol, I'm flashing my purple CF awareness ribbon with my fun, purple nails :)

My life is on pause. I've become quite familiar with a little word that we call "patience." As much as I want to press play or maybe even fast forward, I know that I need to take a moment to gather and piece myself together right now. Rushing forward may not always bring the best outcome.

The skin around my port has healed nicely this past week. My neck muscle, on the side where my port was placed, is feeling more sore than my chest. I think it's due to the fact that I tense up when I cough because I don't want to do anything that could disrupt the healing of my port area. A brand new needle was placed in my port, along with a brand new IV 3000 dressing to keep the I.V. line and wound sealed. My doctor decided to stop intravenous Tobramycin and put me on Colistimethate 150 MG (every 12 hours/BID) intravenously for two more weeks instead. So the new dynamic duo is Colistimethate and Meropenem. Intravenous Tobramycin can cause loss of hearing and balance problems and should not be used for long periods of time anyway. Also, Dr. Shah believed that Colistimethate could make my lungs feel better and that my Tobramycin treatment, if prolonged, might do me more harm than good. In my personal experience, the first combo of intravenous drugs rarely does the trick, and the game plan has to then be tweaked in order to give me the best possible results.

I am very fortunate to have doctors that allow me to do my intravenous antibiotics at home. The best therapy that I could ever get is being with the love of my life, Hunter, and my fuzzy son, Aiden, when I'm not feeling my best. I am so grateful to have an amazing support squadron as well. My mom, Hunter, Hunter's parents, and my friends are so helpful during my time of I.V. therapy, and have often rescued me when I needed a helping hand. Keep in mind, they are the reason that I am able to get well, in the comfort of my own home, rather than in a strange hospital room. I am more on-edge in a hospital setting and I hate feeling stressed when I'm trying to recover. Usually, my doctors have to twist my arm to get me into the hospital. I have done intravenous antibiotics so many times throughout my life now, that I am perfectly capable of administering them on my own - therefore, I prefer to do so. I take exceptional care of myself and I have a hard time trusting others, even nurses and doctors, to do the same. It's not that I doubt the intelligence or capability of these medical professionals, but rather I find it difficult to allow others to completely take the wheel when my health is in the passenger seat. However, I do have a home nurse that comes once a week to draw blood, change the dressing, and put a new needle in the port. Now that I have a port, my new goal is to eventually be able to access my port on my own.

Everyone heals differently and prefers a certain setting in which to heal. My place to recover, recuperate, and piece myself together will always be my home. Home is where I find my patience. Zen monks believe, "if you don't have patience, if you can't endure, well, don't bother, because you won't get very far." I know that I can't force things to happen; healing happens gradually. In the meantime, I'm holding onto patience, waiting to heal, and wanting to breathe easier.

Stepping Stone

"One of the secrets of life is to make stepping stones out of stumbling blocks." ~Jack Penn

*My new beginning, my port*

With Rosh Hashanah right around the corner, I went into the surgery thinking "this is my new beginning." This will be a sweet year for me. I thought to myself, "if I go into the surgery with a positive outlook, instead of being filled with fear, I will have a smooth surgery." Rosh Hashanah is a Jewish holiday which is celebrated at the end of the month, on this particular year. The holiday signifies the start of a new year on the Hebrew calender. I went into surgery yesterday with hope that my port might come to signify the start of healthier chapters in my life. Sometimes, in certain situations, grabbing onto faith makes tough times easier to get through.

Hunter took me to the Winter Park Memorial Hospital, Wednesday morning, at 6:30 am to prep for surgery. 8:00 am was the point of no return, as I took a deep breath and readied myself for the port. Hunter did not leave my side until it was time for the actual surgery. He is the most amazing man. He is my sailboat that keeps me afloat and sturdy in this wavy ocean of life. I was consciously sedated throughout the whole surgery and I kept on hearing voices around me, but I did not know what was going on or feel any pain during the surgery, as a result of the drugs they gave me. The nurses, RTs, and radiologist involved in my surgery made the port placement an overall calming experience for me.

Dr. Mansilla placed the port on my chest (left side). He sewed the port into a pocket of my skin, from the inside, to place the port correctly, and then sutured the port in place so that it would not float. He used dissolving stitches and left the port accessed so that I could start I.V.'s immediately, per my request. My Bronchoscopy results came back and I grew Pseudomonas and a mucoid Pseudomonas strain. The game plan is: Meropenem (1gm vial, every 8 hours) and Tobramycin (40mg vial, once a day) to be administered intravenously via my port for two weeks. Thankfully, Stina (my BCF), gave me advice and helped me to get prepared for the surgery. I am so grateful to my Cysters and Fibros that had shared their port stories with me. Their experiences, some positive and some negative, gave me the knowledge that I needed to go into surgery with confidence that I was making a good decision for myself. Dr. Mansilla decided that the Xcela Power Port, which requires saline and heparin flushes, would be the best port for me. I was glad because that was the port that I had been leaning towards getting as well.

Now, I am so pleased that I got the port. I'm so happy that the surgery went well and that there were no complications. The only thing that hurts is my neck and chest when I cough, but hopefully that pain will subside as the area heals. Tylenol has been my best friend today. I have not really seen the final port result because the area is heavily bandaged, but this Tuesday, I have an appointment to follow-up with Dr. Mansilla, in order to make sure that I am healing well. I hope my purple port is pretty. I have a feeling that it will be. :)

Brass Knuckles

"Give thanks for what you are now, and keep fighting for what you want to be tomorrow." ~Fernanda Miramontes-Landeros

The last time I had intravenous antibiotics was in October of 2010. I'm almost at the one year mark of having no I.V. antibiotics. I try to go a year without needing the I.V. medication. Although, I started to wonder if waiting for the inevitable was really going to help me in the long run. No one has all the answers in the treatment of CF, it's not a black and white disease, it's complicated. I have no regrets in the health decisions I have made in my 26 years of living with Cystic Fibrosis and hopefully my tic-tac-toe decisions will pay off in the long run.

I had a doctors appointment on Tuesday and my PFT's were surprisingly better than my last PFT's! I was feeling a little junky so I expected the numbers to be in the low 40's, however, my FEV1 was 52% pre-RX and then after taking Albuterol via nebulizer my FEV1 was 57% post-RX. I was extremely excited to see those results. I have Asthma along with Cystic Fibrosis so my lungs seem to be happier after a bronchodilator. My x-ray showed a whole different view of my health. My x-ray looked like Casper the Ghost took a bath in my lungs, especially my right lung. A "normal" x-ray shows the lungs in black and the bones in white. This is what my x-ray showed:
The white color that is displayed in my lungs is all mucus. My lungs always have white in the x-ray because Cystic Fibrosis patients are always producing thick mucus in the lungs. When there is an increase in areas or clusters of white parts, I have to be more aggressive and make sure to knock CF and my goodies down a notch with I.V. antibiotics. An increase of white often means exacerbation or infection of the lungs.

I gave my consent to move forward with a bronchoscopy and I decided to show my lungs who's boss! :) I haven't been a fan of getting bronchoscopies because I know that the surgery is invasive. A scope is sent into the lungs to suck up the goodies and saline is also put in the lungs to flush, irrigate, as well as clean the goodies away from the bronchial walls. There are risks of puncturing the lung or the lung collapsing. This was my 2nd bronchoscopy and the surgery was performed on Thursday. I got an I.V. placed in my right hand. Then, I inhaled lidocaine via nebulizer to numb the back of my throat and lungs. I had planned to do the surgery by conscious sedation, but the plan changed because my doctor wanted me to be extra comfy. I was given the Michael Jackson drug, Propofol, through my I.V. and I was sleeping within 2 secs. The drug has an amnesia affect, so I don't remember too much. Hunter and my mom told me that I kept talking really loudly after the surgery, I was telling everyone how great they were, and I even fist bumped my doctor that performed the bronch. lol And I don't even remember talking to my doctor after the surgery.

After surgery, I coughed up blood for the first 2 days and then it went away. It was pinky mucus rather than full blood clots coming up. And I ran 101.4 fever which I was told can happen after a bronchoscopy. After a bronchoscopy the lungs are usually irritated and angry which causes inflammation, bleeding, and tenderness of the chest. I felt as though I had lifted heavy weights. My chest was tender and a little sore, but nothing too painful. I made sure to rest a lot to recoup from surgery.



If you have a weak stomach, don't view the pictures below. The pictures below were taken during my bronchoscopy. My doctor started with a picture of my vocal cords, then took another picture going down my larynx, which continues into my bronchial airways. Fortunately, he was able to get a lot of my everyday mucus up and send the goodies out to the lab to get cultured. I know the day will come where I don't cough, have thick mucus, and can breathe easy. That's my wish.
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*Graphic Pictures Below*

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