5 Years!

November 29, 2013 marks 5 years with my Gastrostomy or g-tube rather. While this may sound silly or irrelevant to most its been a journey worth marking in history. A journey to self-acceptance. A journey to self-love even as CF marks and mares my body. A journey to being able to "do-whatever-it-takes" to be healthy. A journey on sooooo many levels.

November 29, 2008 was ugly. In fact, the middle of November thru January 1, 2009 was REALLY ugly! I hated the g-tube. I hated that CF had once again dictated things for me. I hated that B and I spent Thanksgiving in the hospital. I hated that when we got home our whole life was changed and rearranged to accommodate my CF. I mean, I HATED IT.

Over the next two years I gained nearly 20lbs which was hard, even though I knew that's what would happen and the whole purpose of the g-tube But as a woman, gaining 20 pounds is brutal. I heard comments like "that can't be healthy to gain so much so fast" or "I could never gain 20lbs; I would feel so fat." Silly as it was I read into those comments and as my waist line grew so did the self-doubt. As I went from a size 0 to a size 4, I felt the opposite of healthy.

Until I looked back at pictures of myself. I was all bone and skin. I wore a size zero. I was barely 100lbs and remember feeling as though I was starving all the time, I mean I even stashed food by my bedside. I was always one to eat whatever I wanted and lots of it but being pancreatic deficient I just couldn't keep the weight on. I took lots of naps because I had no energy. I was diagnosed with onset Osteoporosis from chronic malnutrition. The list of goes on and on….

Yet, my mind was so warped about body image that I thought I looked good. I proudly aired that I could wear a size zero, not many 25 year old's can say that. My body was literally slowly shutting down and on some level I was okay with that as long as I "looked" good.

Today, 5 years later, I feel like a new person inside and out. Being on this side of the journey looking back I wish I had opted for the g-tube sooner. I now fluctuate between a size 4 and a size 6, my BMI is a healthier 21-22% and I have the energy to participate in my life. I still have difficult moments of fully accepting my new body but overall I love it. I love that I'm able to set goals like running a half-marathon and know that I have the muscle/fat to do so. I love that I can shop in the women's department and not the little girls. I love that my latest Dexa scan for Osteoporosis showed "normal" bone mass levels. My need for emergency medical intervention has decreased. My lung function has stablized. I just love all the benefits I'm reaping. But, it took my a long time to get to this point. I had to learn to be kind to myself and to have patience with myself.

Today, I'm a huge advocate for the g-tube when needed. I'm on my physicians list of folks to call when they are recommending a g-tube placement to another patient. These patients all have the SAME concerns I did in the beginning. I hate that they would choose to not do it because of body image or the fear of what others will think. I want them to understand how great life with it can be, if, they're willing to embark on the journey.

Initially doctors felt I would only need for about 5 years but honestly I want to keep it for as long as I'm still benefiting from it. Which at this time I don't see a reason to pull it. It keeps me alive and thriving!

I am glad those hard years are behind me.

~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'

CF Clinic Update

Last Tuesday was CF Clinic day for me. The verdict was both favorable and unfavorable.

However, before I go into all the details I just want to publicly announce (again!) how amazing my care team is. I could not be in such great health without them. They are some of my biggest supporters and they always tell me the truth; good, bad or indifferent. They have helped me navigate my insurance company when I was single, fabulous and broke. They have gently guided me thru some of the hardest years yet in my life. They have been a source of support for B, to help him understand the complexities of this disease and to offer words of wisdom when he most needed them. The folks who will take their places upon their retirement will have some very large shoes to fill. Just saying!

The unfavorable:

Let's just get it over with it. I have lost weight. Even with the dang feeding tube. Enough weight to raise a few eyebrows. I hate scales. I hate how so many live their lives as slaves to the number and how so many wrap their self-worth up in what the meter reads, so we don't have one in our home. Until Saturday. Ugh! However, I knew I had dropped a pound or two just by the way my clothing was fitting lately but not nearly 10 lbs. That is a lot for me. The worst part is putting those pounds back on is an upward hill to climb. Yes, I love food. But I hate doing anything that feels like a job and consuming 3500 calories daily becomes a job or worse a chore. 3500 a day will only help me maintain, therefore, I need to find ways to throw in a few more calories to recooperate the lost weight. I suppose I could simply just do the feeding tube more frequently or all day for that matter, but the goal is either use it only to supplement what I eat or to allow myself enough time to "bulk up" thru the feedings and be able to sustain a healthy weight by eating alone and remove the g-tube, or toobie (a cute little wee-one used this nickname). Well, I don't think either of those options will be occurring anytime soon. Instead, I will be adding more supplements to my real food and increasing the calorie intake (nearly 2000 calories from 1500) per feeding tube cycle. This also means adjustments to my insulin and digestive enzymes because of the increase. Fun, fun!!

The favorable:

PFT's were again astoundingly awesome. Awesome for me that is. FEV1 was 79 (normal: 80-120). There are other numbers that are looked at but I'll save you some time  and give the synopsis; my lungs are doing well. They are actually improving, at least from what the numbers tell us. After the Pulmonologist gave me my print out of my results I had a few folks come in and ask me what my "secret" was and my only explanation is the running and being complaint with treatments. Running requires usage of the lungs and therefore they are worked really hard while running. I have the Vest to help on the days I don't run but I am telling you its the running. I can feel the difference. I move more mucus during and after running then by doing the Vest. The Vest moves some mucus, but those pesky plugs way down in the lung come up more frequently with running. This gives me the ability to take deeper and deeper breaths and the medication from the nebulizer treatments can then get deeper and deeper to help prevent damage and maybe even allow a small window for healing and/or rebuilding of healthy tissue. I don't know but I know running is working. It took nearly a year of running to see any difference in my PFT's. So, CFer's don't give up, it takes some time.

I'll leave you with a video of the actual PFT session that I scored my 79 on.

~Doodlin'

Rockin' G-tube Accessories

Have you ever googled an image? Ever wonder where all those "homemade" photos come from? Well, they come from blogs just like this one. Interesting? Yes. Maybe. No

Well, today I was trying to find images of g-tubes like mine. I found thousands. The spectrum of age ranges are from very sweet babies that are days old to the very wise elderly. I don't feel so alone.

My point? I found these super duper cute covers for g-tubes. These particular ones are a bit juvenile for me but it inspired me to attempt to make a few for myself. How cool would I look in my bathing suit this summer with some rockin' g-tube cover? The other really awesome part is that you can make them in whatever type of material is most comfortable to you. Total customization.

~Doodlin'

CFRD you're a thorn in my side

As of late my CFRD (Cystic Fibrosis Related Diabetes) has been a real struggle. CFRD is its own class of diabetes and has been a big struggle in my life to maintain since I was 13.

Diabetes in people without CF is known as either Type 1 or Type 2. Type 1 the body can't make insulin, whereas, Type 2 the body lacks normal responses to the insulin and doesn't make enough of it. With CFRD the body can't make or use insulin. Unfortunately, CFRD affects roughly 15% of CFer's. CFRD is also diagnosed and treated very differently than diabetes found in people without CF.

CFRD has some features that are found in both Type 1 and Type 2 diabetes. Just as with Type 1 diabetes the pancreas doesn't make enough insulin, therefore, people with CF have insulin deficiency which is most likely a result of scars in the pancreas because of thick mucus. Some people with CF get diabetes because they are insulin resistant, meaning that the cells in the body don't use insulin the right way so more insulin is needed keep blood sugars managed.

My struggle with it is that I really hate testing my blood sugar levels and giving myself insulin shots. I can take oral medications all day long but this diabetes thing has always been a thorn in my side. When I was first diagnosed at 13 I did take insulin with each meal (or least I was supposed to) but I had a difficult time incorporating that with all my other medications and treatments. So, my physicians found an oral drug that  I could use along with regular exercise. This worked for years, probably because of my level of physical activity. Taking oral pill alone stopped working about 7 years ago for which my physicians placed me on a once a day insulin called Lantus which is a long-acting insulin.

Mind-you, my sweet dear physicians were sort coddling me. What I really needed was some good old insulin with each meal sort of a regime. I sort of had to face that with having my G-tube placed because I need insulin to cover the massive intake while sleeping. I began taking two different insulin's at the start of my feeding tube cycle, then the Lantus in the morning and continued with the oral for meals. Over the past few months it has become apparent that the oral is simply not working. I am now adding yet another insulin that must be done with each meal. That take my insulin tally up to 4 different kinds.

I will find away to incorporate this. I must.

~Doodlin'

Waste of time?

When visiting for CF Clinic we see a plethora of folks in many disciplines of medicine. CF clinic is supposed to be a comprehensive approach to care, therefore, we are seen by ALL those who manage our care.

There have been times that I have felt like a visit with a particular discipline or quite frankly the individual, is less than fruitful. For example, years ago I thought that meeting with the dietitian was a complete waste of time. I knew from the 15+ years of doing this that I needed to be consuming about 3500 calories a day. Our meetings would be about 5 minutes long. Until, I faced needing a feeding tube.

A little background might be helpful. I really enjoy chatting so I really liked the visit with the dietitian from a chatters perspective but I earnestly thought I knew it all and was managing my weight and/or nutritional needs just fine. I was also young and immature, which are huge contributing factors to my know-it-all attitude. Something more deceptive fueled that attitude. The thought that since I have sort of always been drawn to healthy options and a pallet for healthy fats, grains, proteins, etc nutritionally I was golden. I, like, most have a few things that are my guilty pleasures, Dr. Pepper and frozen corn dogs are a few. I added supplements to meals in the form of Ensure or Instant Breakfast shakes or fat soluble powders as often as possible. I honestly felt that there really wasn't anything more I could possibly add to my routine.

As I have matured and have become honest with myself I came to realize that I wasn't being 100% compliant with adding the supplements regularly but rather I was more wishy-washy adding it only when I remember or could stomach it. Truth of the matter was that after years of drinking the limited three flavors it became a chore to get the stuff down or at times down-right disgusting all together. I wasn't consuming the recommended amount of calories for various reasons. I would get too busy to eat or to plan a proper high caloric meal. I found it expensive to eat so much coupled with all the other expenses of maintaining my CF routines. This became apparent and I could no longer hide; the scale, the blood work, the bone density tests all spoke what I was afraid to admit. CF is hard to maintain particularly when your trying to find your way in life. When attempting to juggle all the 'regular' happenings life like college, social calendars, jobs, etc, etc.... crept in leaving little room to focus on nutrition. This was my truth. What's yours?

However, lying post-feeding tube surgery unable to cough or laugh because it hurt so bad, having to change my intimate time with my husband because I now had to accomodate a tube attached to me during the night and having to adjust what I wore because a new thing now protruded off my stomach changed my entire perspective. Funny how a crisis will do that. I wish my change had come proactively, before needing a feeding tube, I wish I would have put more effort into being 100% complaint and 100% honest but I didn't. Now I have to make the most of where I am. Meeting with the dietitian took on a whole new meaning. 

I no longer see the meeting with my dietitian (or any one no matter what my current state of health is) as a waste of time but rather an opportunity to learn new techniques, become up-to-date on what others are doing, leaning about what is working for others. Asking questions about different ways to make it most effective and efficient for me and my schedule. Finding new cheaper just as effective ways to meet my nutritional needs. Being honest with where I am and asking for assistance in making this work for me.

I encourage all patients and parents of patients to communicate honestly with your care team. They are there to help make managing this disease easier. If something is not working or you feel its unrealistic for you, then be honest with that. If paying for things is affecting your ability to be complaint, state that. They should be equipping you with resources or helping find resources within their discipline to assist you.

There is a reason that certain disciplines are included in our comprehensive care. It's not a waste of time. You get to choose to make the most of the opportunity. I encourage you to do so.

As a side note, I feel great now that I am adhering to the plan that my care team and I have collaborated together on to meet my needs and my lifestyle.

~Doodlin'

What I Wish People Knew About CF

I am a member of Cystic Fibrosis forum that strives to bring a sense of community, realness and positive thinking to those of us with CF and our beloved love ones. A while back the question of what we wished people without CF know about CF or could understand better was proposed. At first I had a laundry list of points and thoughts but then I withdrew from the question entirely thinking it was too complicated to even begin to answer.

As time has gone on that question keeps coming to mind. It flares up when I think that someone should know what I am talking about and not look at me like I'm the idiot. Which neither of us are, I just think there is so much and too few words. I feel like it will never really be understood by those without CF, but that they'll only be able to related thru compassion, empathy and love.

We all know what its like to experience a cold, many know what its like to have a daily routine of medications, many know what is like to face a doctor who gives you statistics on how long you have to live, many know what is like to walk thru life being imperfect in pain with no cure and many know what its like to face astounding medical bills. But to know what its like to have CF, is like trying to know what its like to be another person all together.

I want to be able to education my readers, friends, family and the entire world. I want to give you something that your brain can rap around. I want to paint a picture without making it look hopeless but even that is a daunting task that I think only a lifetime of educating oneself on CF will accomplish.

But I can try to pin point a few things I and other CF'ers wished people could understand better......

• Minor colds, or illness's could be life threatening and please take me seriously when I ask to be notified that your feeling "under the weather" so that I can bow out.

• That not all CF'ers are the same. CF affects each person differently and manifests itself differently from patient to patient. We are not cookie cutters. We are unique cookies, some of us have 3 chocolate chips while some end up with none.

• Taking care of myself is a full-time job with no pay, no benefits and no prospect at future employment. No joke. But most of us have to really seek employment to pay for our medical bills and fear losing SSI/SSDI if we are gainfully employed. So, really, we have two full-time jobs. 

• Our life expectancy isn't 16 anymore. We have fought hard and we have pushed that number up into the mid to late 30's!!!

• CF is our WHOLE life. We don't get better, we never go into remission and we never get a break. EVER. If we do its because we have died.

• We pass gas and can't help it. Many CF'ers are plagued with having to take enzymes to digest food which can't break down the fats and causes massive stomach pain. We are sorry for this and we know its very unpleasant for all who happen to be around. Sorry a billion times over.

• Wish it was viewed as a "lifestyle" disease instead of a lung disease. Because CF is not a lung disease it's a disease of the cells and it affects far more than just our lungs.

• We struggle tirelessly to gain weight. Many of us have G-tubes to get extra calories. We hate hearing that you would trade being heavy or needing to lose a few pounds for CF. Take my word, you would not.

• Just because I have CF doesn't mean my offspring will have it too.

With all that being said, please join the conversation. What would you like to know about CF. What things have you thought "I wonder why, how, when.........." The above is simply from mine and others with CF's prospective based on what people have said to us, asked us and non-verbally communicated to us.

Just curious about what's floating around in your head!

~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'

CF Clinic

Different hospitals and/or doctors offices that are registered CF Care Centers thru the CF Foundation host what is commonly know as CF Clinic. CF Clinic is a specified day that patients see all the necessary doctors or caregivers that are pertinent in treating CF. The most common grouping of doctors is a doctor who's speciality is CF along with a dietitian, respiratory therapists, social worker and/or counselor. Patients see all the above at different times thru out the year but every month or 3-months patients can see them all under one roof.

This can be intimidating. It's typically a much longer appointment; 1 to 3 hours, and it's a lot of information in one sitting. For me, I LOVE CF Clinic. I am a busy person and to be able to see everyone in one big swoop is super duper convenient for me. But besides the convenience factor, how awesome is it that we get to have all our doctors/nurses/therapists (caregivers) in the same place at the same time to collaborate care. Problems are typically solved or at least a game plan is developed so much faster this way. All the caregivers are on the same page about your care, since they've spoken directly to one another which also allows for a more open dialogue, versus email or by phone or worst yet by me relating the information to each one.

Today was my 3 month CF Clinic. My appointment was at 1pm. I always get nervous during the drive because even though I might feel good, the numbers from different evaluation tools don't lie and reflect a decline. I know it seems silly to think that if I feel good then the numbers should reflect that, but the truth is that we sort of become accustom to feeling a certain way after awhile, therefore, a light cough might not be noticeable to the patient as they have become complacent but the PFT's (pulmonary function test) could show that infact the lung function has dropped slightly. The entire objective of having CF Clinic at regular intervals is so that small changes can be adjusted for before things get out of hand or worst does damage for which the patient can no longer regain lost ground.

When we CFer's check in for clinic we are almost immediately taken to our examination room. The less time we spend in the lobby with sick patients the better. The logistics for how each clinic is ran varies. At  my clinic which happens to be with Kaiser Permanente in Portland, Or. each patient is assigned a room and will return to the room for the duration of the appointment. So, if I go to x-ray or the lab, I would return to the same room. This is for sterilization reasons. Here is the entrance to my room today....

As you can see, each caregiver check's off if they have seen me or not. This helps the flow as caregivers move from patient to patient. My first stop after checking into my room was with 'Respiratory'.

RESPIRATORY:
Our clinic always tries to have the patients go to respiratory first so that a base line of health can be established for this appointment. What happens is we use a device called a Spirometry that is attached by cable to a computer to measure our PFT's (pulmonary functions test) because CF is predominately a lung disease this helps the caregivers to know what sort of direction your health is going; stable, decrease, increase. For me, my PFT's have sort of leveled off or have been in the same range for a few years now. This is both good and not so good. We never want to become complacent we always want to find ways to improve the health of my lungs. Today's numbers after doing the PFT's were a bit low, which I was not 100% shocked about. I have been feeling a bit more fatigue than usual, I have a bit more of a cough when I lay flat to go to sleep and upon waking in the morning.

A little snap shot of what the device I blow in looks like for PFT's

I love the hot pink nose pinchers! Got look good when doing these sorts of tests, right?! Let me be clear these tests are not easy, you have to take a BIG BIG breathe in and release it as quickly as possible then in the same breathe continue to push as much air as you possibly can muster. For many CFer's this induces long bouts of coughing, the kind that makes your abs hurt.

The results from my PFT's are given to the physician who will be seeing next. I then go back to my assigned room (which happened to be right next door to this room).

DIETITIAN:
This is where we talk about my weight and how my feeding tube feedings are going. With the guidance of a dietitian we can make any needed adjustments. We also talk about my diabetes because that plays a significant role in my ability to gain weight. No, I am NOT on a special diabetic diet, I would look like a walking skeleton. I am on a very high caloric diet. For example; I used to do my feeding tube 5 nights a week but I have since decreased the number of nights to 3 and have maintained my weight for over six months on the 3 nights only!

SOCIAL WORKER/COUNSELOR:
This is such an important component to overall health when battling a terminal illness. We chat about all things that are going on in my life as well as how I feel I am doing in my journey with CF. I personally have and still battle with episodes of depression. In working with my social worker we have a game plan along with anti-depressents. We also talk about positive things that I can do in order to enjoy each day more. For example, sit outside for 10 minutes just taking in slow deep breathes. It's amazing how fresh air and quietness can rejuvenate a soul.

This piece I believe is fundamental.

DOCTOR:
So, the doctor is typically the last person we see. The doctor consults with everyone before seeing the patient or many times they all talk together along with me. The doctor allows me to ask any questions about any of the test results or to bring up other concerns that I feel need to be addressed. I also talk with my doctor about my diabetes because he also specializes in Endocrinology. Then my doctor and I (yes, I) talk about what we can do to facilitate the best care. I truly love that my medical team values my input. They work from a philosophy that the patient must be educated about their care, willing to carry out their care plan and able (physical, financial, etc) to carry out the care plan. If one of those pieces is missing then it won't work.

CONCLUSION:
I am on a 14 day round of Cipro for a sinus infection and we are adding another nebulizer treatment to help boost my PFT's back up. So I am taking it easy for the next 2 days or so while the Cipro works on fighting my pseudomonas and try to fit another neb treatment into my daily routine.

But because I am such a good patient and for all the times I didn't get any treats because they were chocolate I got a huge bag of my favorite bit size yummy's.

I left CF Clinic at 3:55pm! Phew. So I hope the mystery around what happens at CF Clinic is no longer such. Please ask me any question that comes to your mind, if you are thinking it I am sure others are too!

~Doodlin'

A Word: Compliance

Last night while doing my nebulizer treatments I was thinking about how long it has been since my last IV (intravenous) treatment and how long it has been since my last in-patient hospitalization. I am proud to say that its been a year and a half (November 2009) since my last IV treatment and about 2.5 years (November 2008) since my last hospitalization. Astonishing!

Growing up I spent lots of time in the hospital, usually 2x a year for up to 14 days each visit. Needless to say I grew very accustom to the hospital. I had "hospital" bedding, slippers, pillows, pj's, etc that would go with me to help make the stay more comfortable. This is how you can identify someone who has spent too much time at the hospital, their hospital room looks like their room at home!

By the end of the treatments I was trying to figure out why my health has either gotten better or stabilized or was it a figment of my imagination? My conclusion is complicated but the gist of it is that I have began to understand and appreciate doing my medications.

I have been apart of so much medical advancement and have been lucky enough to be on the receiving end of the advancements. I think that one of the biggest things I have been able to do is mold my life and lifestyle around CF. While this may appear that I am letting CF control me, I am in fact doing the exact opposite. In order to have freedom from a disease you have to treat it. I have to be able to do all my medications and be able to take time out (sick days, rest days, etc) in order to enjoy my life and in order to be a productive employee.  The older I get the more I really understand and appreciate this concept. It used to be that I would put off the treatments in order to go play, go to a movie, watch tv, or whatever. But the truth is that I would feel sick, short of breath, have headache's, have low or high blood sugars that would leave me feeling depleted. When I started to reverse my priorities and take care of myself I could then really engage in whatever activity I was doing. There is a word in the medical field for all this, compliance.

Compliance is always brought up in CF Clinic. Are you being compliant with all the medications and treatments. This word compliance, is like a hammer-to-the-head, for those with a chronic illness. Seriously, I hated having to answer this question in clinic. Because, no matter how much I strive for perfection I will never be able to be 100% compliant 100% of the time. I am human, not God. I am riddled with errors. As I have found a balance, I can honestly talk about compliance in a more realistic way. I am compliant to the best of my ability and I am always looking/seeking for new ways to be more compliant. For example, doing my Vest is an area of difficulty for me because I hate sitting still for 20 minutes with literally nothing to do. The Vest, for those of you who don't know, vibrates the chest area to help the patient cough up the mucus. The vibration is really strong, so much so that I can't read during the treatment, can't hear the TV over the machine, can't really do anything that requires hand-eye coordination.  I put a commitment on Facebook about this dilemma and got lots of great ideas, like books on tape or podcast. PERFECT! Now I have solved the biggest hurdle in my compliance issue with my Vest treatments.

So, do I think my CF has gotten better, no. Has it stabilized, maybe in some ways. Do I think I have found a happy healthy balance, absolutely. I made a promise awhile ago to doing all my medications and I intend on keeping that promise but I also want to build upon that. I want to do them with a happy heart knowing that its my gateway to a smoother path rather than with dread. If you, as my readers think of fun ways to do things like The Vest or nebulizer or feeding tube treatments please let me know. We can all learn together and we can all make improvements together.

~Doodlin'

A Pillow Soaked with Tears.

I lay hear in bed the clock flashing 2:34 a.m. and my is mind racing. The tears are flowing down my face, along my hair line soaking my pillow. I am alone, B is in Sisters, working. Why the tears?! Cystic Fibrosis.

I have boarded the crazy train, my boarding pass has me seated in 'temporary' and I am not hoping to be upgraded. I want off. I want a refund. I will walk whatever distance. Please God please!

I am afraid. I am lonely. I am starving. I am suffocating. I hate it with every fiber of my being. I hate all it has robbed from me. I hate it for what it will rob me of. I hate that I am crying over it. Hate is NOT a strong enough word.

I want to be free of this g-tube and tubing connecting me to the feeding machine for the next 5 hours of a 10 hour cycle. I want to roll over in bed without having to untangle myself.

I want a cure. Yesterday. Until then my pillow will help dry away my tears.

~Doodlin'