CF Fundraiser Cut-A-Thon at Glow Spa Salon, Oakland CA July 1, 2012

387 Grand Ave, Oakland, CA 94610

Cut-A-Thon

Sunday, July 1st 10am-2pm

Haircuts $25! Add on a Blow Out for $20!

100% of proceeds go towards life saving research for the

Cystic Fibrosis Foundation / www.cff.org

What Is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

         • clogs the lungs and leads to life-threatening lung infections; and

         • obstructs the pancreas and stops natural enzymes from helping                   the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF.

Event Details: Appointments can be made in person or by calling

(510) 452-GLOW, with pre-payment of cash, check, debit or credit.  Please make checks payable to Glow Spa & Salon. Walk-ins welcome!

Mail or drop off in-kind donations to:

Glow Spa & Salon 387 Grand Ave, Oakland, CA 94610. (510) 452-GLOW

A receipt for your donation will be provided.

Nail, massage, and skin care services are available the day of the event. 

Please book online www.glowspasalon.net

| Adding tomorrows every day.

Because of risks to people with cystic fibrosis (CF), individuals who have had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex shall not attend this event. This is because B. cepacia can be passed between individuals who have CF through close proximity. B. cepacia infection in a person with CF can cause serious respiratory illness and, in some patients, may lead to death. Despite this policy, there might still be some individuals with B. cepacia in attendance. B. cepacia is not a risk for otherwise healthy individuals. For alternative ways to participate and for information about this policy, please contact the CF Foundation at (800) FIGHT-CF or visit www.cff.org. Consult your CF care center physician with medical questions.

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.

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.