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

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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.