I'm not part of the 4% but WOO HOO for those who are!

Latest development in CF Medication and Treatment gives hope!

Just the facts

It is officially winter in the Bay area.  We had our first rain of the season a week ago and the chilly air is setting in this week.  This is the time of year I traditionally start to feel ill and my body and mind suffer the greatest. 

I am feeling quite crappy physically and mentally.  Over the last month my lungs have become more congested and it’s more difficult to clear my airways.  My sinuses started to cause me headaches while the mucus was clear but now it’s changing to infectious green and giving me post-nasal drip further irritating my throat.  No amount of ricolas and hot garlic/ginger/cayenne tea are helping.  I’m feeling very tired and sluggish even sleeping 10 hours a night. 

My first visit to the Dr. in 2012 revealed some normalcy and some new developments that I need to make some quick decisions about.  My FEV is 111%, an increase of 3% from 6 months ago.  This means my lung function is still very good even though I don’t feel well.  My sputum culture was mostly normal reveling heavy growth Pseudomonas Aeruginosa.  On the other hand, it had a new culture of HAEMOPHILUS INFLUENZAE which is a bacteria that is often found in the respiratory tract and plausibly why I am feeling crappy.  NOT to be confused with the flu or H1N1 flu.  My Dr. said it is usually treated in NON Cf patients with antibiotics and only in CF patients if we are feeling symptoms.(refer to paragraph two).  Now I have to decide if I ask for antibiotics.  Pills, pills, pills damn it.  My vitamin D lab revealed an ULTIMATELY LOW level.  My dr. said it might be the lowest she has ever seen.  She has rx me ADEKs daily and superdoses of vitamin D with a digestive enzyme weekly for 3 months…again.  At least I’m still not bloated:)  Lastly, I am at my heaviest weight in 7 years, 124lbs, so all that eating is sticking somewhere!

All my life I’ve been a busy minded person who's focus is easily derailed and the cold weather and lack of sun is no help.  The same remains true today.  I am working full time and attending school part time while working on multiple mini projects.  My lack of focus is causing me to be less productive in all areas resulting in stress on my already weak immune system and a constant state of exhaustion. SIIIIGGGGH.  Doing too much is my middle name. 

Cold weather highly affects me mentally and has done since I first moved to San Francisco in 2002.  Winter rain and cold makes me want to stay inside which results in less motivation, less exercise, less focus.  A.k.A  S.A.D.  For real.  Seasonal Depression.  I don’t think it needs a medical name but I definitely experience it.  They relate “the blues” to the chemical changes in the brain caused by changes in the amount of sunlight.  I already am lacking in vitamin D which is created in the body when exposed to the sun.  Cold weather and lack of sun = lack of concentration, indecisiveness and fatigue.  What can I do about this yearly issue?  Move to the sun.....

Me and Erin at Whole Foods

On a happier note, my man and I are planning another vacation to Hawaii.  Maui is one of my favorite places to visit and it may just be my next home.  My mother retired after 40 years as a nurse and plans on volunteering for the Opera, traveling more and enjoying life alongside my dad who has been retired for about 7 years.  Thank goodness because we thought she’d never retire!!  I’ve been making more time for my dear friends and even got to do a mini photo shoot with my girl.                   

Life IS good.  

My current situation living with CF

Although it may seem otherwise, my health is important to me and I do want to live a healthy long life.  I just do not agree with so much of western medicines idea of treatment.  I read the CF community blogs and get irked by all the issues people have with the continuous drugs and picc lines etc etc.  There has to be a better way.

My current situation living with CF

I have yet to return to the western Dr. since my last visit…more than 4 months ago.  I missed 2 appointments in the last 2 months after making serious effort to go into the clinic and make an appointment.  The fact is, I don’t find any relief or anything new when I visit the CF clinic.  I take the same tests and am forever telling them what I am doing for myself while they could give rats ass.  Kudos to my Dr., who listens, but I think she knows as well as I do, the western way is not my way.

I UNDERSTAND my case of CF is MINE and I do not have as severe a challenge as others patients.  When I try the Dr.’s orders I feel like shit!  I take antibiotics and then I feel worse after.  I get a PICC line and it takes 5 tries to get it in and they never stay put because my veins collapse.  I take enzymes and I can’t pass a bowel movement without taking a laxative.  At 34, this process does not make sense to me, and hasn’t since I was 12.  The Dr and their rx’s do not make me feel better.  I feel worse.

I have the normal CF problems such as mucous throughout my body and malabsorption of vital vitamins due to enzyme deficiency.  The mucous is almost zilch and hardly effects me when I eat properly…NO DAIRY, NO WHEAT and NO FRIED FOODS and run on a regular basis.  I have incorporated saline (salt) treatments into my regimen which are traditionally done through a nebulizer, but instead, I have chosen to put the saline into a humidifier and “beach” my bedroom and sleep in the salty air.  This allows me more time to enjoy life instead of feeling like an invalid strapped to a machine.  As far as my pancreas and being enzyme deficient, I’ve been experiencing extreme bloating for most of my life.  I have tried everything the CF clinics have prescribed including several types of enzymes, laxatives, vitamins, supplements, shakes, diets and even undergone removal of 2 feet of bowels.  I’ve tried numerous herbs and acupuncture and only experienced temporary relief but have never had a comfortable properly functioning digestive system. But QRA has just begun to change that!

For the first time in YEARS, maybe ever, I am no longer experiencing the pain, bloating and irregular bowel issues from eating 4k calories a day enzyme, laxative, vitamin, and supplement FREE!

3 months ago I experienced my first session of QRA, Quantum Reflex Analysis.  It “is a method based on B-DORT, a bidigital o-ring testing that allows any strong person to test strength and weaknesses, strength and specific, identifiable nutritional deficiencies, in every gland, organ, and area of tissue.  QRA is the specific identification of not only nutritionally-deficient organs, glands, and tissues; as well, QRA matches with exquisite precision what nutrition is deficient, and how much.”

My back went out at work one day after 3 months of growing stress and I finally made the call to see the practitioner hoping she could help my BACK.  I traveled a couple hours to see her and spent 5 hours in my first session in which she was able to provide me a thorough analysis and 1^st treatment.  The analysis confirmed several of my organs are weak and distressed and I am highly deficient in Vitamin D.  All of which my acupuncturist had explained to me over the last year as well as western medicine telling me about my vitamin levels.  After a series of tests, “clearing” and mud therapy packs, I went home with a vitamin D supplement to take for a couple weeks and to experience the most INTENSE bowel purge of my life!  It was excruciating and I was in tears.  My man cared for me throughout the experience, which lasted about 90 minutes.  Since that moment, my back and my bowels have been remarkably FINE!!  No pain, no aches, and no bloating!   I’ve even indulged in pizza and enchiladas, two foods that used to have me staying at home for 24 hours.

I am a true believer in QRA and walking proof that it does work.  I am continuing to see my practitioner for all of the “mystery” aches and pains and undiagnosed problems I’ve been suffering with.  I am look for a better quality of life that doesn’t require drugs, needles and knives.  I am finding it.

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.