Accomplished 2011

I am guilty of the traditional human RESET on January 1^st when I swear to start a new diet, a new exercise regiment, or plan for financial freedom.  I always have great intentions, but for some reason, I over set my goals and end up in March like a lost dog.  As 2011 comes to close, I begin to reflect on my goals and accomplishments in 2011 and what I want for 2012.

This year I planned to work on my health by adhering to western medicine principles while including holistic healing, join the technological age of Blogging and Facebook, work on my career as an esthetician and massage therapist and get my drivers license back!!. 

Lake Merritt, Oakland, CA

I started off the year with medical issues and fighting with the Dr.’s about my care only to revert to acupuncture, massage and herbs for healing.  I started this blog and was steady at writing but not in posting.  I lost momentum shortly before my 34^th birthday caving to a full time job that sucked my health back to illness.  Since I haven’t been posting to my blog, I’ve been on FB!!  Not a good substitute but I think I’ve found it to be complimentary.  I can post info about CF on my FB as well as a link to my blog while staying in touch with family and friends.  My career is always evolving and I’m always learning new skills, but stability is definitely a challenge.  I got my license back last week and I’ve landed a new job that I start on the 2^nd of January.  I accomplished my goals of 2011.

For 2012 my goals are challenging yet simple.  Maintain and better my health, relationships and career.  I'm looking forward to a fun filled full year!  See ya in 2012.

Cough Cough Cough......Cough

Cough cough cough

Some people can only remember me as one who coughs while there was a long period of my life that I didn’t.  Now, I have a cough that people recognize from across the room, and I’m still not used to it.

Coughing is hellof annoying for me more than any other human (besides those who share my issue) could possibly imagine.  How would you like to try and hold your laugh knowing a coughing fit is 100% to follow the joke?  Try eating a meal and having a coughing fit trying not to spit your food all over the place.  Even better, just randomly coughing when sitting in a movie theatre without the ability to STOP coughing.  ANNOYING!! 

I started a new job and my cough is an issue.  I work with a Dr. and two nurses and they don’t know I have CF.  I haven’t volunteered the information even though they have questioned my cough, asked if I’m being treated for it and even made comments on how to fix it.  It’s no simple thing to get a job and have to explain “I have CF, “ after you’ve been hired and working.  Especially after having dodged the questions by saying, “I was sick and still have this residual cough.”  My boss, who is a Dr., was shocked when I said they took a sputum culture, stating, “it’s not normal to take a culture in outpatient clinics.”  At that moment, I was about to spill the beans as to not make her continue and end up making her feel like a fool later, but I bit my tongue and pretended like I didn’t know any different.  AWWWW.   It is a new challenge for me to have to explain my cough to my employer.  It has never been an issue and I do not know how to approach it.  I do not want to be seen as a liar, but it doesn’t affect my job performance so coming outright when I’ve only been there a month doesn’t seem needed.  Not too mention the cough is random and never happens in the treatment room.

At my other job in hotels,  my cough attracts every type of healer, physician, therapist and joe shmoe to inquire and offer advice.  When I cough, they each feel the need to tell me they have the cure to my cough.  No dairy, no wheat, no cooked food, no processed food, no sugar…blah blah blah.

2 weeks ago at my hotel, I had a Chinese lady, who is a Dr. from China and practicing here, ask me about my cough.  She asked how long I had it, what color was my mucus, if I had asthma and lastly, if I had tightness in my chest.  She was sincerely interested and concerned so I answered all the questions.  She said “Stop eating sweets and swim.”  RIIIIGHT….  I gave her a sheet of paper with “Cystic Fibrosis” written on it and asked her to do some research and then make a new suggestion.  She returned last week with a very serious face to explain she did her research and was very concerned.  In a very thick accent, she explained that exercise was VERY important, and that having chronic illness meant I need to have a regular care program and that regular herbs would be very helpful.  She also was very serious when she said, “sometimes antibiotics MUST be taken for serious infections.”  She also offered to meet me next week at work, take my pulse, which in Chinese medicine tells them a whole shit load of information western Dr.s give you expensive tests to figure out.  Then she would like to make herbs for me to take for a week and we go from there.  My own acupuncturist(sp?) has me on regular herbs that have helped greatly and I see no reason why she would be against me hearing what this other woman has to say.

As one who rides public transport, I encounter so many “joes” who think they have a cure or fixall for my cough.  Sure, their suggestions come from kindness, but sometimes it is too much.  I am not the only CFer who hates the lame ass comments that come when we cough in public.  Even my friends give me look when they hear outsiders chime in.  This is what I here on a regular basis;

Lemon and honey will fix that!...IF ONLY!!!!

I just got over that…..NO YOU DIDN’T!

Can I get you some water?...Sure, but I might spit it all over you.

Do you have Swine Flu?....NO

Get up and move seats.

Don’t die on me…..That’s POSITIVE…Thanks

And then I just cough cough cough again…

I was at the Genius Bar (that’s the APPLE store for you PC’s) waiting for my appointment.  I cough.  The lady next to me backs way given me the evil eye.  I cough again.  She then rushes towards me gesturing with her arms around her face saying “cover your face like this when you cough!”  I was calm…and responded by saying “ I did cover my face.”  She says “ NO….you need to do it like this.  That sounds horrible and we are all germaphobs!”  A little annoyed I said “ would you like to know why I’m coughing or are you just wanting to fire directions at me?”  She says “ NO, I don’t care, just cover your face like this.”  SIIIIGH….And then I just coughed…uncontrollably..but purposely in her direction, for the next 2 minutes.”  I watched her suffer in pain not wanting to leave her computer.  Then said “excuse me.”  I Sat right back down next to her and started typing.  Bitch.  Excuse my French, but really…I wanted to hack loogie on her keyboard.  If I’d have seen her in the street, I might have spit in her path.

I am working on filtering my reactions to such moments, but at the end of the day, it’s all about ignorance and education.  When a comment comes, it’s my job to educate.  If they deny the opportunity to hear what I’m saying, it’s their fault they remain ignorant.

I’d love someone to offer me a tissue and a hug.

Therapy…spiritual, mental, physical

I recently decided to return to my spiritual healer and incorporate therapeutic massage into my therapies.

I met my healer last year shortly after I began my studies in massage therapy.  At the time, I was focused on my inner being and spiritual wellness and not so much the physical ailments I was having.  I didn’t realize how helpful the combination of spiritual healing and massage would be for my daily challenges. 

My healer is a seriously intuitive, compassionate, REAL person who is an energy worker, LMT, psychic and an all around good person.  I consider her to be one of the most amazing humans I’ve ever met.  I’ve worked through issues with her that I’ve suffered with for years in one session.  She incorporates massage into her treatments, when needed.  Prior to my hiatus from our sessions, I had experienced a few of those massage treatments.  It wasn’t until I more recently started to have massages specifically for my CF problems (deep massage to treat the spasms from coughing) that I realized how complete the spiritual healing sessions were.  I am now doing both.

My healing sessions are different every time and my healer utilizes all the tools including touch, sound, site, and visualization to help me reach my goal in each session.  What I’ve found is that, I hold the power to better myself spiritually, mentally and physically.  She is like a conduit who reads my body, mind and spirit and guides me to the answers I’m seeking.  In my last session, she helped create movement internal and externally through a series of stretches and massage.

In general, it seems people indulge in receiving a massage on occasion and not for the health benefits.  I personally feel it should be included in every health care plan.  Although massage can be relaxing, it can do so much more.  It increases circulation, allowing the body to pump more oxygen and nutrients into tissues and vital organs.  It improves range of motion and decreases pain.  It reduces stress, the cause of nearly 90% of disease we face.  It releases endorphins, the body’s natural painkiller, therefore reducing the need for medications.  It stimulates lymph flow and supports the body’s natural process of detoxification. 

My LMT (not the spiritual healer), explained my pains like this…every cough is like a mini spasm and continual coughing causes tiny spasms throughout my whole body resulting in cramps, tightness, aches and other uncomfortable sensations.  I have started to pay attention to what muscles are tightening when I cough….EVERY FREAKING ONE!!!  Even my feet flex when I cough.  My back and chest and belly are the most affected I’ve found.  Talking about getting an unintended work out.

Between the two therapies, I am finding my mind more focused, my body less tense and a positive flow of energy making everyday a little easier.

"Give Up Your Personal History"

Give up your personal history, Embrace your personal history...my cards read...

"There are no accidents in an intelligent universe, so all the dark times, accidents, illnesses, and broken dreams were part of your spiritual advancement.  Embrace them, understand them, accept them, and then tranform them in your own way."

I am reflecting on the past, and looking towards the future.

BIRTHDAY TIME!!

My birthday is coming!!!  34 days to my 34^th bday!! (a little off since I wrote this a few days ago…) WOO HOO!!  Some people dread getting older or at least the onset of sagging skin, memory loss and arthritis.  I see the aging changes in my skin, my lack of memory and the arthritis I’ve had for 14 years, so 34 is just another year of life and wisdom.  I wouldn’t go backwards for anything.

The last of the party lifestyle

30th bday

My birthday is a big deal for the sheer fact that I was told that 12 would be my dying age.  At 12 I said, “I will to live to be 30.”  When 30 came and I was drunk and high, literally.  I was inside a club in SF dancing with my best friend without a care in the world.    I was oblivious to the fact that I had reached 30.  It wasn’t until 2 days later that I had an epiphany that I wasn’t dead and wasn’t going to die anytime soon.  It’s taken 4 years to get over my party lifestyle and get onto the straighten arrow.

So here I am, a changed and changing person, for the better, ready to celebrate the next stage in my life…ADULTHOOD. 

No Ordinary JOE

I’m sitting at the front desk of my job and a young man walks through the door wearing this shirt

 I was stunned.  Before he could say a word I blurted out…."Do you have CF?"  He said yes….and I said " I do Too!!!"  I was the first person with CF this 14y.o ever met outside of the Dr. office and he is the first person I’ve met with CF since my last visit to CF camp when I was 12! 

This young man left an everlasting impression of an empowered CF patient.   14 years old, going to work out on his own accord, knowing it will help his over all health, eager to ask questions and not just accept what he is told; he was just like me when I was 14.  

Life is confusing when you are 14 and CF absolutely complicates the process.  Making choices in regards to telling people about your CF is a heavy one.  Fear of being rejected, laughed at, explaining pills and treatments and why you have to go to the nurse so often is outright SCARY.  At 14, I was just out of the “ugly duckling”  XXXX stage, getting braces and entering high school.  I had to figure how to mesh into a school with 2500 students without being TOO different, pick and choose my circle of “in friends” and hope that my secret wasn’t revealed.  ‘He expressed, he was feeling the exact same pressures.  I thought I was different.  But I know now, we who live with CF, face many of the same challenges.

I hope that Joe can find himself, balance his health and lifestyle and figure how to “mesh” without too much stress. 

More than anything I was so happy to see and hear from a young man who was living life, facing the challenges and not letting the world hold him down. 

Keep running Joe!

Skinny Bit$$es eat too

I’m standing in front of the club getting some air when this guy, who is blatently tipsy, decides to say…”Damn girl…you so skinny…how you stay so thin?”  I pause….and ask him…”do you really want to know why I’m skinny or are you just harassing me.”  He says…”I want to know..” while patting his beer gut.  He started to explain how genetics are at fault for size as he took a puff of his cigarette and I started coughing.  End of conversation.

Skinny, as I’m so often called, is NOT normal or healthy.  Neither is my distended belly so often confused for 5 months of pregnancy.  I’m skinny without choice.  Genetics...Cystic Fibrosis, is the culprit, as the drunk guy said.

Having Cystic Fibrosis means that the mucus in my intestines prevents the normal absorption of fats and vitamins from foods which leads to poor growth, being underweight and challenges fighting infections like the cold or flu.  I need extra calories (try 3000 a day minimum) and nutrients to help fight infection and keep my lungs strong.

An average female my age/height/weight, needs to eat 1600 calories a day and exercise 3x a week to MAINTAIN her size.  In my case, I need to double the calories to hopefully maintain the weight.  Now, if I exercise 5 days a week (we are talking cardio here), I'll need to eat an extra 1000 a day.  That's  4000+ calories a day!!!  

For example...a BIG MAC is 500+ calories. A California Sushi roll or a bowl of spaghetti with tomato sauce are about 350 calories each.  One bowl of fruit (2 cups), depending on the fruit, is about 185 calories. 

You see the issue here?  On a good day I eat about 6 smallish meals (500 calories) and 2 BIG(1000) meals.  On average,  I eat 4 small meals and 2 big ones.   Not to mention I snack all day.

Next time you wanna point out I'm skinny, just give me a sandwich. Two of these will work:)

Birth Family search

Dad and Mom

Being adopted has hardly affected my life, except when the dr.’s ask “Do you have a history of…blah blah blah…in your family?”  My first response is to say yes, my family has a history of…., but I have to stop and answer the question in regards to my Birth family, which I don’t know anything about except CF is in their genes.  This repetitive question has led me back on a search I started when I was 18.

California is not playing when they say “closed adoption.”  Closed, meaning the ORIGINAL birth records are sealed, literally and figuratively.  To “unseal” the records, a formal written and notarized request that is COMPELLING and shows necessity of the information in the record must be sent to the Superior Court.  IF they feel the request shows validity, then they MAY allow a VIEWING of the record. If they do not allow a viewing they usually will provide non-identifying information for the seeker, but not the identifying information like the names of the birth parents. 

I thought having a GENETIC illness would be compelling enough considering I’m still alive and when I was born I had a death sentence of 12.  BUT, I learned when I was 18….the judge was not hearing it.  I found some non-identifying information in my searches, but nothing solid and nothing that would lead me to my birth family.

This search is not to invade my birth families lives or leave my family.  I do have the desire to learn about my heritage and show them how far I’ve come and thank them for their decision.  How do I do that without invading their lives?  How do I do that without the names of my birthparents?  

I’ve written a brief compelling letter to the judge asking to open the birth record.  What is compelling anyway?  Am I trying to make them cry? Laugh? Smile?  Should I sound desperate, eager, scared or threatened by death?   The directions do not give any hint as to what is a valid reason so my letter is a 4-sentence paragraph that paraphrased, goes something like this;

“I’m dying.  My dying wish is to find my heritage and share my story of life living with CF.” 

OK, so it’s a bit extreme, but TRUE…right?!  No I’m not on my deathbed, but I’m not getting any younger!!!  CF is GENETIC and the only souls on this planet that I’m related too and are passing on the genetic code are my birthparents…and their relatives and kids etc. 

CMON Superior Court!!!!!  Wish me luck

Alternative Medicine

I've been consumed in the madness of life...and haven't touched on my focused area of health care...Alternative Medicine.

For me, it started 4 years ago after quiting drinking and trying to find my mind after it being drowned for so many years.  I saw a spiritual healer who offered guidance and tools to balance my MIND with my body.  I  started doing yoga, meditating(which continues to be a major challenge for my busy mind), and doing affirmations.  WOW....in 30 days, I was like a whole new human.  Although I was "fit" physically on the OUTSIDE, my disease was eating me inside.  My guts were a mess and my lungs just couldn't get the oxygen it needed.  Western medicine....as you know by now, just seemed to cause more problems I couldn't handle.  I was recommended to an acupuncture clinic.

NEEDLES....was a  little scary thought, but shoot, I'll try anything once.  4 years later, I am so glad I took that first step into the clinic.  Since then I've tried many acupuncturists but finally found THE ONE a little over a year ago who is the most compassionate, dedicated professional I've ever met.  She listens to me...she RESEARCHES everything I ask and EXPLAINS everything she does or recommends.  She knows her profession, and she knows me.

Since I started this blog earlier this year when I was undergoing some major health challenges and a round of antibiotics, I was also seeing her regularly.  The acupuncture treatments alongside herbs and cupping, made it possible for me to maintain without the harsh side affects of the antibiotics.  I think this is the most beneficial part of acupuncture treatments alongside western medicine....the supportive function.  Of course, I'd rather never go to the western Dr., but.....not realistic.

It would take many many posts to explain in detail how it all works,  Acupuncture and CF will explain how Chinese Medicine views Cystic Fibrosis.

As for now....I'm removed from western medicine except for saline treatments and vegetarian enzymes.  I see the acupuncturist once a week and recently added massage to my weekly treatment strategy.

I am feeling 100x better, my cough is stable and my body is functioning normally again.  I'm back at work full-time and back doing headtricks!

Realistic Pessisim

Let me give you some realistic pessimism.  How come we have so many diseases, millions of dollars in research and technology and rarely a cure?  How come we have SHIT LOAD of DRUGS to SILENCE whatever pain or ailment we are experiencing, but each drug has a laundry list of possible side effects, always including DEATH?  How come the pharmaceutical companies make TEMPORARY FIXES, but no cures?   Generally, people can't handle whatever they are going through and DRUGS seem to be the best option and quick fix to PAIN.  HELLO VICODIN LOVERS!  But these drugs aren't FIXING or CURING, they are temporarily numbing.  A human is MOTHER NATURE WALKING...and MOTHER NATURE will decide if you live or if you die and when.  Yes, that might sound a bit extreme to some, but my life experience tells me drugs (from the hospital or the street corner) are either a slow or quick death in a bottle, bag, or needle.

SO many people donate millions of dollars to research to find a cure.  FIND A DAMN CURE FOR SOMETHING!!!!!  ANYTHING!!!!!  sorry...but sometimes it's so much..

Overwhelmed

Being overwhelmed is no joke and is the reason for the sudden river of tears down my face.  I completed the required treatment to calm the inflammation of pseudomonas aeruginosa in my lungs last Friday.  Two days later, I’m coughing like I never even took the medication.  Moments ago, I coughed til I had no air, my face red and my chest aching.  When I finally got a deep breath…the tears just rolled down my face.  I used to think I was a strong CF patient.  Now I’m realizing, I’m just beginning to face challenges some kids and adults have been dealing with their whole life.  Does that make me weak?  What a painful thought.

I haven't even started the new regiment of drugs and I'm already overwhelmed, annoyed, frustrated, and hurt.  I’m struck with the realization that I have no control over this disease and drugs are just a prolonged death sentence that cause other breakdowns in my system causing the need for some other drugs....and the cycle continues.   Sure, I can run everyday (which I have been doing), I can take the drugs,  I can go to appointments and smile on the outside, but in reality, I am a mess. 

Nothing is for sure in this life except death, another overwhelming thought I've come to encounter since I've started to see Dr.'s again.  Something about drugs and Dr.'s make me think about death instead of life.  I'm caught up wondering what drug is going to make me sicker, not better.   But it's not like I'm making it up in my head, I'M LIVING WITH THE SIDE AFFECTS of every drug they give me.  When I wasn't taking drugs, I wasn't thinking about dying.  That leads me to believe, pharmaceuticals, just like street drugs, highly effect one's mental state.

Maybe If I wasn’t so destructive in my 20’s, I wouldn’t feel like shit today.  Maybe if the media and Dr.’s didn’t give CF patients a life expectancy or a death sentence, I wouldn’t have taken my life to such extremes.  MAYBE, if I was taking my health more seriously and didn’t get distracted by the troubles of life and consumed with the statistics, I wouldn’t be feeling like shit today.  Maybe, coulda, shoulda, didn't, and did.  

The fact remains, I am more overwhelmed by the idea of taking drugs and seeing Dr.'s than I am of death itself.  This is not a joke.  

"MAY" I feel great and listen to the DR.s

The last month has been an EYE OPENER to say the least.  Antibiotics, vitamins, treatments... I just feel like a lab rat.  It is ALWAYS a RISK.  I feel the risk when I inhale the medication or swallow a pill.  I feel my body is saying "not again." I have always been resistant to medication.  It started when I was 12.  I just said NO MORE.  Since then, taking medication has been nothing but a challenge.   Today, is no different.

CIPRO was added to my previous RX for the colonized pseudomonas in my lungs.  It is an atibiotic which kills everything in my system good bad or indifferent.  This is GOOD, because the bacteria that makes me sick should reduce greatly enough for me to feel “normal” again.  This is BAD because the bacteria that keeps me healthy and maintains my immune system is also killed off. 

While I’m in this process, one of my sputum cultures grows psillius, which is a black mold.  AHHHHHH!  First thought, WTF??  Second thought, call the DR.  While calling the DR. I look up the mold on the internet to find a LIST of symptoms I’ve had the last 2 months followed by the words FATAL.  O FU$% THAT!!!  I already have one death sentence, and this one cannot be happening!  After repeated emails with the Dr., she insists I take the CIPRO for 2 weeks, and not stress the mold.  The main issue is the pseudomonas.  Really?  I’m not so sure I like that plan.  Ok, so I’m taking the CIPRO, but what about my symptoms?  What about this mold?  She explains that the mold is not something that is considered a pathogen (causes disease) and that it showing up in my lab is not something to freak out about.  OK, so yes, of course I freaked out!  DUUH.  

Previously, I have had clinic staff say inappropriate things to me, which has not paved a way for me to think clearly, or take advice from anyone in the clinic.  The last couple months I’ve been making major effort to listen and follow the Dr.’s advice, ask questions, and do what they say.  I decided, instead of being so resistant and challenged by a system I am not fond of, just follow the Dr.’s advice and take the medication.  No matter what crap has been said to me, she is my Dr. and I cannot discredit that. Nonetheless, I still feel that there is a lack of compassion and emotion in the clinic.

Instead of continuing on a SELF DESTRUCTIVE path of AVOIDING the Dr., complaining about PAST situations at the clinic or whatever else I didn’t like, I decided it’s time to seek out a second opinion about my health in general at the place that cared for me from birth to the age of 20, Stanford Medical Center, which is a CF research Center.  I needed a fresh face, a fresh point of view and human with an outside view of who I am, what CF is doing to me and how to approach being an adult with CF.  I let my Dr. know and she seemed fine with my plan.  

After jumping through some loops and SERIOUS effort by the Stanford staff, I was seen in their clinic last week.  I brought along my man again so that he could evaluate ME, the clinic and staff in comparison to our previous visits elsewhere.  He was highly impressed and could see why I act out of sorts in my current clinic.  The staff was very helpful, listened to my concerns and point of view and offered helpful information.  The Dr. who completed my evaluation obviously realized I am not the easiest patient to work with and also took my standpoint into consideration.  He was very specific about his concerns, how he could help and what I need to do to get to the point I want to be.  At the end of the day, he RX a treatment plan that includes 3 types of drugs and EXERCISE.  SIIGH, I'll say it again, I hate pills and drugs.  Exercise, I LOVE.  

This Rx came from Stanford, who in turn has sent the info to my clinic and hopefully SOON, fills the Rx and I can start the regiment.  Unfortunately, it doesn't seem like my clinic is taking my willingness to participate seriously.  As I stated, I have been resistant a long time, and the fact that I am TRYING and I am still am not getting results from my clinic, is rather FRUSTRATING....So, I must be patient right?  

Western Medicine. Individual Care. WARNING: FU$K flows freely in this post

Start HERE if you are new to this blog


America’s health care system needs revamping FOR SURE.  Consider having a terminal illness, pre-diagnoses, unable to get health care and when you do, the limits.  LUCKY for me, my mother works in health care so I have insurance.  I do not even know how people can AFFORD to care for a child with CF without insurance or with it!!!  I read CF care is 9 to 14x the normal.  We are in recession still…My heart goes out to those families suffering with or without CF.

My major gripe and ongoing frustration involves Dr.'s who treat patients like cookie cutters, Rx the same drugs to everyone and don’t listen to the INDIVIDUALs needs, concerns or lifestyle choices.  I am the one who has been in my body for 33 years, so I don’t know why Dr.'s think they know more about me then I do.  Especially when I go to clinic 1x a year for the past 7.   You think you kept me alive?  Gimme a fucking break.  Sure, I have CF and they specialize in CF, but I feel like I’m a fucking statistic.  I am an individual with specific needs and concerns and lifestyle choices.  Why am I given the same treatment and same preventative care plans when I have managed to keep myself ALIVE at a STABLE weight for 20 years, have no appetite issues, and no exercise challenges (besides laziness)? This whole western medicine thing makes me hang my head and cry.  I am an individual.  Don't pretend to listen if you aren't.

Let me just say, my parents have kept me alive, and I believe my choices to avoid the drugs and pills and change my diet have also extended my life.  There is something to be said for not LOADING up on IV antibiotics my whole life.  I took oral antibiotics, specifically CIPRO, for any kind of illness.  Last year my pseudomonas was resistant to it which isn't abnormal.  Antibiotics help MANY.  They kill deadly bacteria.  They save lives.  But at the same time, they deplete the body of it’s GOOD flora.  I have yet to EVER EVER EVER have a Dr. recommend or prescribe PROBIOTICS to go with the antibiotics.  In 2008, I thought I was going to die because my body had been depleted of good flora.  I took a round of antibiotics thinking it would HELP.  After,  I lost 20 lbs in a couple weeks, had severe diahrrea and overgrowth of yeast internally and externally.  It took seeing an acupuncturist, an herbalist and talking with a fitness professional to find out wtf was wrong and get my body back to normal.  When I figured it out and returned to the dr. to tell them all I needed was some probiotics, they say, oh yea, that would be helpful.  FUCK YOU.  You Rx Drugs.  But you fail to mention something that might kill me anyway?  Who gives these people a PH.D? 

My previous CF Dr. said something that sent me off the deep end and the reason I avoided the clinic for soooo long.  After an appointment in which we were discussing my preventative and current care, he says  “ I am a Dr. I prescribe drugs.”  FUCK YOU.  Another reason western medicine does not sit high on my list.  I am really trying to only make statements on EACH individual and not the whole of western medicine.  They have a purpose for sure.  My current Dr., who works with my previous Dr., doesn’t seem to have that "I prescribe drugs" approach.  But then again, I did mention I hate pills.  I only take antibiotics under SERIOUS situations yet I understand the need for western medicine.  My last Dr. appointment, I brought my man with me, so I “had a witness” and how the Dr. reacts to my needs and concerns.  I was very clear and told her, I’m not going to take a bunch of pills and antibiotics no matter how much she wants to say they are preventative.  So when I agreed to the treatments she recommended, I hardly expected an email 4 days later stating she wanted me to ADD an oral antibiotic to the regiment  ESPECIALLY, after me being so clear about my concerns and needs.  AND NOPE.  NO PROBIOTICS.  SO, I called the office and left a message to inquire her recommendation.  I have yet to get a call or email back.   Maybe she's on holiday.  I'll call on Monday.

When I met my new Dr. last year, I expressed my feelings about being an adult with CF, my approach and what I DON’T like about my previous Dr.’s approach, what I was willing an unwilling to do and my personal experiences.  She said she understood, but that PREVENTATIVE care was her main concern.  She also stated she didn’t know if it would be more helpful or harmful to load me with antibiotics because they do have side affects which weaken my lungs and since I am in such good condition, it was a fine balance.  Does that mean the last 4 PICCs have depleted my lungs so much that now I'm at only 100% instead of 130%?  Now I have to have yearly treatments?  Do I take the meds, or say fuck it and continue with my holistic herbs and continue to learn as I go?  How do I know what is working and what isn't working?  I'm taking this month of western meds.  I am on a continually learning path and what I see happening, is exactly why I never took all the meds before.  In past, I had a plan to follow the antibiotics with some regular routines to keeo my lungs at 130% and didn't follow through.  I won't do that again.  I think they are doing more damage then good.

Western medicine for most CF patients seems to be ideal.  That’s what I read in others CF Blogs and hear from the medical community.  What I have to say to that is, THERE IS ALWAYS ANOTHER OPTION.  DRUGS HAVE SIDE EFFECTS.  FOOD(or that crap we eat out of a box and call it food) HAS SIDE EFFECTS.  LIFE HAS SIDE EFFECTS.  Stress, anxiety, hormones.......all have side effects.  It is up to each individual how to deal with all of it.  You can so easily just do what you are told, but that doesn’t mean it is right or the best choice for you.  I'm learning on this path and will continue to tweek my choices to my body talk.


With that said, I'm starting a new section on my blog about interesting "facts" and what is good and bad for CF care based on my experience and readings.

I am taking the Western Rx daily inhaled antibiotics, hypertonic saline and vitamins.  I am also taking my self Rx probiotics.  I feel….fine.  No big changes.  It’s not even a week yet, so no worries.  I am having some rather annoying bowel issues which could be from the vitamins and the antibiotics.  I’m sure the drugs will take effect and I’ll be back at 130% shortly. 


In the meantime, back to the dance floor.

Pills, pills, pills, can you pay for my pills

Start HERE if you are new to this blog

SIIIGH.  To think I have a mild case of CF and all those children and teens who suffer so greatly everyday with SO MUCH medication and treatments.  I am so blessed to be so healthy.  Everything is relative....

I’ve been coughing up loogies (AKA thick phlegm) for a few weeks.  The coughing is somewhat normal, the loogies, not so much.   I’ve been to the acupuncturist and been taking herbs, which are helping greatly, (finally got 8 hours of sleep last night) but because the cough is so harsh, I haven’t been able to work.  Then I get a random phone call from my CF clinic.  SHAAAA!  Last time I saw the Dr., in June of 2010, they put a PICC in my arm.  I put it in the air.  I said “I feel like shit,” and then the clinic calls.  The power of the word….watch what you say.

I’m really resistant to western medicine with all their colorfull pills and fancy knives, but I recognize the need to have regular care by a CF physician and some necessary testing.  I should at least hold up my end of the deal and make a twice yearly visit. 

I dislike the Dr. with a passion, not a specific Dr. (ok well a few), but in general.  Some hate the dentist, I prefer the dentist.  I’ve managed to only go to the Dr. once I’m already sick.  Not the best plan considering I have a chronic illness, but preventative care involves pills, needles, breathing treatments, vests and some other shit I hate.  Ok, so illness requires the same, but on a limited time frame.

I made my annual appointment at the CF clinic.  My Dr. sent in lab requests for 11 vials of blood, urine test and sputum (loogie) culture.  2 phlebotomists later and 5 sticks, they get their blood and I’m off to pee in a cup.  Then my dietician tells me we need to see how pancreatic insufficient I am.   Sometimes I feel like my life with CF just started. 

So what exactly are they looking for in my blood anyway?  Vitamin levels, specifically A, D, E and K.  Those are the fat soluble vitamins we CF patients are unable to absorb properly because of our pancreatic insufficiency.  We take a supplement (ADEK’s) to get those vitamins into our system.  It usually requires a digestive enzyme to break down and absorb the vitamin supplement.  That means I’m taking 2 pills instead of one.  Did I mention I hate pills?  Oh, and the enzymes are made from porcine pancreatic enzyme (pig enzymes) …uhh right, I just found this out after YEARS of not eating meat.  You’d think they would have mentioned that.  ERRRRR..  FYI, I haven’t taken any pills, except 2 superdoses (1 a week for two months) of Vitamin D and the occasional enzyme for the last year.  I did say I hate pills.

Other tests include blood platelets and calcium, which are responsible for clotting the blood.  Calcium and vitamin K must be present in blood to support the formation of clots (see above ADEK’s).  If your blood is lacking these nutrients, it will take longer than normal for your blood to clot. If these nutrients are missing, you could bleed to death.  The blood platelet count will rise when inflammation or illness is present in the body.  This test helped diagnose my autoimmune disorders: Arthritus

& Reynaud's Phenomina

I saw the Dr. today and the tests results are in:  LOW in all vitamins, especially vitamin D and A.  The plan:  2 months of weekly superdoses of vitamin D, 1x daily enzyme (found a vegetarian option) to absorb daily ADEK’s.  Did I mention I hate pills.  AHHHHH!  At least it’s minimal.

I took my Pulmonary Function Tests (western medicine).  Normally my FVC and FEV1 are about 130%.  Today, for the first time EVER my FVC was 135% and my FEV1 102%!  At first glance, to almost anyone in the CF world, this is flippin’ awesome!!!  Over 100% is a rare pulmonary function test.  But for me, that means my lung capacity has dropped 30%!!!!!  O HELLL NAAA!  This is a serious situation.  This means I have enough phlegm in my lungs that I am unable to successfully cough it up, blow it out or move it.  Who wants to start training for a marathon?  I need to start running again! GREAT STRIDES, here I come!

What is the plan?  THE DREADED ANTIBIOTICS!!!  AHHHHHHH!  I hate pills and a PICC line is out of the question so fortunately, I can get them via inhalation.  This is the Rx: One Month of

2x a day Albuterol (inhaled bronchial dialator to prepare for the next step); 15 minutes of inhaled Hypertonic Saline (7% sodium chloride), which will break down the phlegm so I can hack it out; followed by the antibiotic Tobramycin.  For a final touch, I’ll be drinking my homemade kombucha and BIO K to get those PRO-Biotics that replace the GOOD Flora the antibiotics kill.

Let me know if you want to take a run....

My Medical History in Brief

Start HERE if you are new to this blog

My medical history is short compared to most CFers.  I’ve had very few problems and until the last 8 years, really didn’t even “face” my CF because it wasn’t a daily challenge.  I've had other medical issues I'm including that have nothing to do with my CF.

9/1978 Diagnosed with Cystic Fibrosis with a sweat test of 98 

http://www.cff.org/AboutCF/Testing/SweatTest/

7 years old:  Benign tumor removed from belly button.  All I remember is what looked like 7” long needle the surgeon inserted into my belly button to give me anesthesia which hurt like hell.  Next thing I can tell you is I had a little bump from that needle that I continually scratched….for years….creating a serious scar on my belly that looks like a lightening bolt.  Hard to see in this picture, but the dark circle is also from that procedure.

15 years old:  Sinus surgery to fix deviated septum and remove nasal polyps.  Plenty of NON CFers have polyps, but CF patients seem to have it MUCH more.  The average CFer I know has had this surgery 4x!!!  Me, 3x.

WHAT ARE NASAL POLYPS?

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002607/ 

20 years old:  Bunion surgery on right foot.  This was before new advancements.  I had a piece of the bone removed and the rest screwed back together.  I had knee high cast for 3 months, which didn’t stop me from driving a 5-speed with my toesJ

6 months after foot surgery I had sinus surgery to remove nasal polyps, AGAIN!  Complications required the surgery to be stopped and a week later, back under the knife!  O HELL NA!! 

25 years old:  Intussusception.  This is a medical condition in which a part of the intestine has invaginated into another section of intestine, similar to the way in which the parts of a collapsible telescope slide into one another.  This usually happens to infants and young children, so for me to have this happen at 25, was a medical phenomena.  I am proud to say my surgeon was very accurate and managed to leave me with a straight scar...not some crooked ass keloid.  This was one of the worst experiences of my life and because of it, will refuse any future surgery suggestions.  If I’m not unconscious or dead, good luck cutting me open.

GRAPHIC VIDEOS...NOT FOR WEAK STOMACHS!!!! This is not me, just SIMILAR to what  they did to me.

THE WHOLE SURGERY: 
 http://www.youtube.com/watch?v=lLFhU5T1X58

THE UN-TELESCOPING OF THE INTESTINES: 

http://www.youtube.com/watch?v=Ex6axVN8TWM&feature=related

27 years old:  FIRST lung infection and heavy antibiotics for 30 days via a PICC.  This was a rude awakening. I really came face to face with having CF.  PICC lines are something CFers experience often, although I have had only 4, that's enough!  A 90 minute drip of antibiotics every 6 hours.

HOW A PICC IS INSERTED:
http://www.youtube.com/watch?v=Ne3FRpXTyy8

28 years old:  Lung infection treated with heavy antibiotics for 3 weeks via PICC.  Post a major relationship ending, I was a mess and failed miserably to take care of myself.

30 years old:  Ecoli!!  I think I died and came back to life.  After a month of abdominal pain, a urinary track infection followed by a bladder infection, they tell me I have an ecoli infection.  I’m down to 100lbs at this point, which is ridiculous.  I remember going to bed one night watching my favorite movie, The Princess Bride and a stuffed animal thinking it was my last night on earth.  I didn’t even call anyone to tell them.  When I woke up the next day, I thought I was dreaming.  I made some phone calls and decided it was time to take care of myself.  I reached out to my friend who directed me to the health food store and acupuncturist.  I was nursed back to health over the next 2 months. 

31 years old:  Back to the Dr. for a PICC.  This course of antibiotics was the most intense and my body suffered the most.  I got down to 99lbs, could barely walk up a flight of stairs, had an overgrowth of yeast inside my body and on my skin.  It took 6 months to recover.  My skin has never been the same nor has my lungs.  I definitely feel weaker and more susceptible to infection since then.

33 years old:  Overgrowth of bacteria in lungs requiring heavy antibiotics for 3 weeks via PICC.  This was the worst of any PICC I’ve had.  The PICC nurses swear they know everything, as do phlebotomists, but my veins aren’t what they seem.  The nurse struck a nerve and sent lightening bolts through my body.  I wanted to strangle that woman.  They tried to insert the PICC again under x-ray so they could SEE the veins, and again, NO SUCH LUCK.  What happen to my first PICC nurse?  She did it so smooth in one try.  I ended up having the PICC inserted and 3 days later my vein collapsed.  I refused another try so they used a peripheral IV.  WAAACK SAUCE!  A PICC is so you don’t have to be stuck many times….so much for the idea.  I was a pincushion for the next 3 weeks.  BOOTSIE!

As for now….I’m definitely going through some lung issues.  Watch out for enormous mucus balls flying out the window of the car.  My Dr. isn't so sure I should be getting PICC lines considering my lungs are in good condition.  If I do need treatment, lets vote for oral antibiotics!

Let Me Introduce Myself

Start HERE if you are new to this blog

I was conceived in Louisiana, born in San Francisco, and raised in San Jose, California.  I was adopted at 3 weeks of age into the Davis “Clan, “ as we call it.  That is my mother, father (celebrating 42 years of marriage!!) and older brother along with my extended family.  This is my family.  The only one I have.  Blessed by them from the day we met.

I am Creole, have never met my birth parents, but have done some research to find this story:  My birthmother and birthfather grew up together.  He was 24, married with 3 children and she was 17 when I was conceived.  Due to her catholic upbringing, having children out of wedlock was forbidden so she went to San Francisco to be with her grandmother and finish school.  After I was born, her grandmother encouraged her to name me and she decided on Patricia.  She returned to Louisiana shortly after my birth. 

Yes, it would be nice to meet the people who created me, see where I get my looks from and learn about my heritage, but it is not a priority at this point.  Having cystic Fibrosis, which is genetic, is really what keeps me curious.  By law, the adoption agency was to notify my birthmother that I was diagnosed with Cystic Fibrosis, but my visit to that place didn’t really give me the vibe that they follow the rules.   At the end of the day, I’m 33.  It’s not like she forgot she gave birth.  Maybe she blacked it out of her memory.  

My mother, in her early nursing years, diagnosed me with CF at 3 months.  She and my father encouraged the Dr.’s to give me the sweat test for 9 months, saying I tasted like a potato chip when they kissed me.  What do ya know?  Mom knows best.  Diagnosed with out a doubt with a 98-sweat test (60 is the FOR SURE mark).  Immediately thrown into an array of medications and treatments, my parents had their hands full.  STILL DO!  The Dr.’s said I would live to be 12 but that didn’t discourage my parents or me from living life to the fullest.

In short, I’ve been on a roller coaster of ups and downs but I wouldn’t change it for the world.  I’ve seen and done things others dream about, I’ve outlived my life expectancy by 21 years and counting and I continue to keep it moving despite the world’s challenges.

keep it real.