Amazing new drug, devastating cost!

Kalydeco drug for CF mutation G155D shows promising results but the cost is astronomical.

ALOHA MAUI!!

Return of the BLOG...ALOHA MAUI!! - PART 1

In August 2012, my man and I visited Maui for the last time and January 4^th, 2013, we made Maui our new home.

35th Birthday at Flatbread Paia

The decision to move to Maui was based on several island vacations over the last 12 years in which I felt positive changes in my physical and mental health.  I visited Maui several times and Jamaica as well and found that the temperature, sunshine, salty air, and slower lifestyle of the islands were positive factors in my health.  Stepping off of the plane into the warm air immediately put my muscles at ease and calmed my mind.  It was like a natural sedative.  The more time I spent the better I would feel.  January 2012 I decided it was time to make a long-term commitment and find out which factors were truly helping and which were “vacation” relaxation.

ALL PACKED UP!

VOG Day

Cane burning

The 3 possibly negative factors about Maui were the absence of care for Cystic Fibrosis, VOG, and sugar cane burning.  I wasn’t too concerned about a CF specialist because I hardly went to the Western Dr. in California.  I focused my healing on natural remedies, holistic health care and Chinese medicine.  If I did have some major issues, I figured I could always see a pulmonologist and go from there.  The VOG is basically volcanic air pollution that stems from the Big Islands Madam Pele. The volcano sends sulfur dioxide into the air, which reacts with other gases, moisture, dust and sunlight to form VOG.  “VOG exposure reduces the bodies natural abilities to expel toxins.”  The sugar cane burning is of most concern to the residents, which can create or exacerbate respiratory issues like asthma.  I’d experienced the air changes from the burning but not in the long term.  I was willing to take the chance to find out.

Unlike people imagine, we don’t live on the beach and watch palm trees sway in our front yard or spend all of our time surfing, although we should!  We live UPCOUNTRY!  Upcountry is a lifestyle as well as a part of Maui that is covered in lush green farmland with horses, chickens, goats, a plethora of bright colored birds and the occasional peacock.  We live on a large plantation property in Makawao about 20 minutes to the beach in Paia.It’s truly magical but not the traditional image of Maui. 

Makawao Estate

Living upcountry means we are in a completely separate micro-climate than that of the beach towns of West side Lahaina, South Kihei or East side Hana.  Makawao sits between 2000 and 4000 feet on the West side of Haleakala overlooking the ocean on both sides of the isthmus with views of the sugar cane fields, north shore and the West Maui mountains.  Although it is cooler and rains more often, we chose this area for it’s non-city culture and country lifestyle.  Lucky for us, I have friends in “high” places on the mountain who were able to hook us up with a beautiful home!

FRESH FROM MAUI.....

Candy Apple Red.....

Budget Rental car says they are out of compact cars and decides I'd look better in a candy apple red mustang!  OK!!!  Looks may be deceiving considering this car can GO, but damn is it uncomfortable!  I bashed my knee first thing into to steering wheel and what's with the funky seat adjustments?  This  thing has 4 seats but it is a 2 seater!  Wish I still had my 89'.

35th Birthday Lunch Desert...YUM!!

Tommy Bahama's makes nice clothes but their lunch is AMAZING!!  I'd have taken a picture of the food but I devoured it in seconds!!!  Desert on the house!!

24 hours in Honolulu

28 minute flight, 90 minute lunch, 2 hour nap, 6 hours at the club, 2 hour nap, 3 hours paddle board....and back to the airport...

3 hour delay for a 28 minute flight from Honolulu to Maui

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.

Lack of posting...updates

WOW, it's been since March since I blogged.  Yikes.  I  have a lot of catching up to do but I just want to post a couple articles I just read.

http://www.sciencedaily.com/releases/2012/05/120527115543.htm

http://www.sciencedaily.com/releases/2012/05/120524092750.htm

Exercise...and 1 and 2 and 3..

I’ve been working on my state of mind and dealing with my mood swings and emotions through change of diet, vitamins and light therapy.  Journaling has always helped me, and I’ve started to do so more frequently, which hopefully runs off into this blog.  Until the last week, I hadn’t noticed how much physical exercise helps me.  But not just any exercise is working.

My current exercise program is to stretch for 10-20 minutes, do some mat work for the abs, legs and butt, hit the treadmill for a couple miles, and pump some iron weights for a total 90 minute workout.  I hardly break a sweat unless I’m wearing a hoodie and a beenie.  I do feel accomplishment after I’m done, but I don’t feel like I really WORKED OUT.  I don’t get exhausted, nor do I feel like I actually need to stop.  Actually, I feel like I could keep going for another hour, but I am worried to push myself and get injured.  So I stop, hit the sauna or steam room at the gym or the shower at home.  20 minutes later I feel like I could do it all again.  And, I could.

Last night, like so many other nights lately, I danced on an off for a couple hours at the club to reggae and dancehall.  I was sweating so much it looked like I had just taken a shower.  I felt rejuvenated, yet exhausted.  When I got in the car to go home, I felt like I had just run 10 miles.  A week ago, I had a similar experience in which I went to a bar that plays salsa, meringue, samba and other like genres where I was whisked into a night of nonstop dance till the sweat dripped down my face.  Dance was my body and mind therapy growing up and I think I just realized how it might just be the answer to my current mental and physical challenges.  Bring on the endorphins!!

I know I know…DUHHHH!!  But sometimes it takes personal experience and an epiphany to see things and for me it usually takes a few slips and trips and a slap in the face. 

The clock strikes 9 pm and I’m off to the yoga mat to stretch out before bed.

Vitamin D. The Sun. My Emotions.

 I have yet to post my CLOUDY DAYS story, but I feel like I need to post more about my current situation prior to that 5 page story.

I started to work on my so called anger issues in rehab when I officially stopped drinking just after my 30^th birthday.  I say so called because over the last 5 years I’ve come to realize that my emotional state may have a lot more to do with my hormones and vitamin levels than the alcohol or drugs.

Last year I decided to get a psychiatric evaluation because I have had a long history of anger issues, which I contribute to family problems, and they contribute to my drinking problem, and the drinking problem I contribute back to the family issues.  It’s a big circle. In any case…back to the situation.  I felt those anger issues coming on but also extreme sadness, happiness and irritability. 

A year after I checked into rehab, I started to have irregular periods and mood swings like never before.  I was angry, sad, happy…an emotional wreck.  I thought, well I’m in my 30’s and this is normal.  I thought, maybe I’m still detoxing from the alcohol and drugs.  I thought about it a lot and nothing seemed to make any sense.  I’d been to the Dr., the CF specialist, and the OBGYN and none of them had any in site.  I decided a psychiatrist might have an idea.

My first Psychology visit was to fill out a 10 page questionnaire and attend a group introduction to the program.  Then I met with my psychiatrist who gave me a briefing on what my answers meant.  Bi-Polar Disorder.  She gave me a bunch of information and asked what I felt about her thoughts.  She said it was not a DIAGNOSIS.  There is no blood test for BPD, just evaluations.  She said it would take a few more visits and evaluations to actually diagnose me.  I was a bit thrown off, explained my view on Bi-Polar disorder and started to tell her my life story. We met 3 more times and each time I gave her more of my life story.  In the end she was not too shocked about my drinking or anger or emotional state.  She, just like my previous psychologists, neurologists, general physicians, and rehab counselors, agreed that the family issues were definitely a major factor in my mind state.  She said the only treatment for BPD is medication and therapy.  As you know, RX drugs are not my cup of tea.  She said if I didn’t want to take them she couldn’t help me any further.  WTF!!!!  AWWWWW.  So I left my final visit with no answers except that she thinks I need to take drugs to stabilize my mood.  BOOOO!

Since my visit with the psychiatrist I’ve been paying close attention to my mood swings and emotions.  I get the standard PMS, but I also get wave like emotions throughout the month.  In January, when the sun was covered in clouds and the cold set in, I started to experience extreme sadness.  That’s when I started to research S.A.D.  At the same time, my CF Dr. told me my vitamin D levels were at an all time extreme low! It wasn’t until then that I started to put the two together.

I took a look back at my vitamin D levels over the last 5 years.  Low and behold they had a couple peaks in the normal range but for the most part, they have been slowly dropping.  I looked at the timeline of my vitamin levels in comparison with my journal entries only to find low vitamin D levels when I was experiencing sadness and anger.  Makes sense considering this information I just read: 

“Vitamin D helps the brain produce serotonin, a neurotransmitter critical to emotional health. Vitamin D deficiency can contribute to negative emotions such as depression. Likewise, increased vitamin D consumption elevates mood and promotes a positive outlook.”

Vitamin D benefits our body in so many ways and deficiency is associated with Osteoporosis, Cancer, and Auto-immune disorders like Diabetes Mellitus, Multiple Sclerosis and Rheumatoid Arthritis (which I have been diagnosed with.)

I’ve experienced how the sunshine affects my overall health on numerous occasions.  Every time I’ve visited Hawaii, I experience a quick change in my mood from blah to WOO HOOOO and body health from illness to wellness.  When I was in Jamaica for multiple months, I also experienced the best health of my life.  I’ve recently been experiencing how the sunshine affects my body the last couple weeks while the Bay Area has been relatively beautiful and for the most part sunny.   I feel better after immediately being in the sun and sustain that feeling for at least a couple hours after leaving the sun, but then my mood seems to plummet and I become highly irritable.  It is interesting to think I am so highly affected by the sun that even hours after exposure, I feel like shit.

All of that said, alcohol is a depressant.  I have a history of alcohol abuse and can attest to the truth behind that.  The following statement sums it up;

“There is ample research analyzing how alcoholics tend to process emotion distinctly and with a range of behaviors—often misinterpreting nonverbal cues expressed in people’s faces, having dampened or flat reactions where others would have strong responses, being prone to impulsivity and a lack of social inhibition, and tending toward aggression, to name some.”

I do not drink anymore yet my emotions and health are seriously suffering.  This leads me to believe that although alcohol may have been a factor previously, it isn’t one now.

It has become very clear to me that my exposure to the sun and vitamin D levels have such a great impact on my emotional state, more so than any other external element or supplement, that I need to figure out how to get more sun exposure.  Not more pills.

Lights and Vitamins

I did some research on Light Therapy for Depression and it is a highly recommended treatment.  I decided to set up lights in my bedroom and living room.  I sat at least an hour a day in the light cleaning, organizing, studying and just laying there doing nothing with bare minimum clothing on.  I definitely felt the difference in energy during the day.  I also felt a lift in my mood.  This is a fluorescent light, which according to my research is = to about 300-500 LUX (standard unit of light flow) while the sun provides about 20000! Nonetheless, I am feeling the effects.  Coincidentally it’s been sunnier than normal the last 4 to 5 days since I stopped sitting in the lights and going outside and I feel about the same.  Today it is foggy and I can't stand the cold so back to the lights.  

Pills Pills pills….I started on the ADEKS and made it through 4 days without forgetting and then I dropped the ball.  I have such a brain blocker when it comes to pills.  Why can’t they put it in a tea like Chinese medicine?  I never forget to drink tea!!!  Needless to say, I’ve not been consistent with the ADEKs.  I haven’t taken one Vitamin D super dose!  I know, I’m only hurting myself, but every time I take a pill my brain starts questioning, WHAT THE FUCK IS THIS ANYWAY??  It’s some gelatinus pill they call vitamin D.  The ADEKs are not any better.  They are horse pills that are hardened powder it seems that pulverize into dust in my mouth when I chew them.  YES, I understand I do not have the enzymes that help me absorb these vitamins, but maybe JUST MAYBE there is a more pure answer.  Vitamin D is assimilated when we expose our selves to the sun.  MAYBE just MAYBE I NEED TO BE CLOSER TO THE SUN??  Ya think?  If I was getting proper vitamin D, then the rest of me would function better, right?  I’ve spent A LOT of time in sunny, hot, salty air climates and I have been in the greatest of health in those situations.  Hmmmm…

In the evening time I continue to salt steam my bedroom and the results are thinner plegm and a plethora of it!  This is great to get all that gunk out, but it is taxing on my body, my sleep, my man’s sleep and my career.  I was coughing up close to 1.5 cups of phlegm a day which if I told the Dr., she’d probably recommend antibiotics.  I’m down to maybe a half cup now, which means there is less in there I hope!  I haven’t been in the salty steam in 4 days now and the mucus production is stable yet annoying.  I cough throughout the day every time I change environment from inside to outside, from one room to the next, from the car to the house and it’s productive every time. 

Ok, I’m off to the gym.  xoxo

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.

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!