Sunday, February 4, 2018

Do not go quietly/, into the dark night; call and write the people who can help us!

American Urological Association
1000 Corporate Boulevard
Linthicum, MD 21090
Phone: 410-689-3700 
Toll-Free: 1-800-828-7866
Fax: 410-689-3800
Email: aua@AUAnet.org


Europe 
EAU Central Office PO Box 
PO Box 30016
NL-6803 AA Arnhem, The Netherlands 
T + 31(0)26 389 06 80

Canada
CUA Corporate Office
185 Dorval Avenue, Suite 401
Dorval, Quebec H9S 5J9

Tel: +1 514 395 0376
Fax: +1 514 395 1664


Irish Society of Urology 
c/o RCSI Conference & Events 
123 St Stephen's Green,
Dublin 2

Get in Touch:

Phone: +353 087 4045832
Fax: +353 021 4344907
Email: info@irishsocietyofurology.ie
Twitter: @ISU_Urology

Thursday, January 25, 2018

Dying for relief: We NEED Opiates.

I know there are many more people who have chosen death because they are treated so piss poor by doctors. Perhaps not just IC/PBS, but many pain patients who just can not take this pain anymore. The humiliation of having doctors blatantly tell you they wont help you. The financial crisis this pain causes.
The quality of life issues.
The reality is that to our Doctors, CDC, WHO, DEA, FDA, and Federal government; we do not matter. We are a burden. A blight. Something better off dead than on meds. We are denied basic Constitutional rights and even more basic medical care. We need to push back and push hard. We DO matter. Let the world hear our about our pain. If you read this I ask you share the link anywhere you can. Tag Potus, flotus DEA CDC FDA and doctor organizations. The more we speak up the harder we will be to ignore.
Imagine if we all PUBLICLY demanded pain treatment? HOW long can they ignore us if we become a voice they can not hear over? Please join the fight for basic human rights and dignity in treatment.

Doug Hale Oct 2016
https://www.painnewsnetwork.org/stories/2016/12/22/chronic-pain-patient-abandoned-by-doctor-dies
Allison Kimbery June 2017
http://m.legacy.com/obituaries/denverpost/obituary.aspx?n=&pid=185902615&referrer=0&preview=True
Diane McLean March 7th 2002
http://barryyeoman.com/2003/06/not-just-a-bladder-infection/


http://tau.amegroups.com/article/view/8043/8838

Olivia Crowther June 24th 2008

https://www.google.com/amp/s/jeancalder.wordpress.com/2008/07/26/cystitis-can-destroy-lives/amp/


http://www.o-wm.com/content/interstitial-cystitis-recognizing-and-caring-wounded-bladder

http://causes-of-death.healthgrove.com/l/8166/Interstitial-cystitis-chronic

https://www.inspire.com/groups/interstitial-cystitis-association/discussion/suicide-and-ic/
cutting_down_on_opioids_has_made_life_miserable_for_chronic_pain_patients.html


Saturday, January 13, 2018

Everything hurts

  In a flare so bad I wish I could cut my own bladder out. If I thought an ER would help Id go. If I lived in Amsterdam Id tell them I was an addict just to get pain relief. That should not be the way of medical care. There is ZERO reason we should be forced to endure this. Zero. I keep sharing this blog, in hopes someone somewhere has both the compassion and authority to treat this disease. To treat us like human beings who deserve care and compassion.

Thursday, January 11, 2018

If I don't laugh I will cry.

*Have you tried cranberry juice?
* Eat alkaline.
* Pray for healing if you are not healed you must not be faithful enough. 
*Eat blueberries.
* Go to a doctor, surely they can prescribe you medicine.
* Why dont you just get pain meds? 
* Have you tried aloe?
*Just pretend you do not hurt.
* There is no way you pee that often.
*I'd just kill myself if I had that. 
* Aren't you over that now?
* Can't you get disability?
*Just wear a diaper.
* It can't be that bad. 
* Have you tried( insert any essential oil brand).
* Can't you just take an antibiotic?
* Get vicoden from your doctor.( They do not prescribe that much anymore people.)
*Are you sure it hurts that bad?
* There is no way your pain is always a 10."Nurse said that."
* Disability is for people who need it. ( Disability worker who also laughed at me while I was crying in pain."
* Your bladder is a normal size. ( a urologist) 
* Follow the IC diet( there is no specific diet) limit your fluids( doing that makws pee more acidic thereby worsening pain) suck on sugarfree candies for dry mouth.( UroGYN IC specialist, Artificial sweetners make it worse, she should at least KNOW that. 

Thursday, December 28, 2017

Is your doctor trustworthy?

This may seem like an odd question. However, amidst all the recent witch hunts over opiates another dark part of the Big Pharma underworld has come to light. That is, that pharmaceutical companies are paying your doctors to prescribe sponsored meds.

Seems shocking, I know. I have briefly discussed my disgust with a urogynocologist I was sent to and how horribly she treated me when neither of her big sponsored drugs helped my symptoms. However, she is but one crappy piece in a giant game.

http://www.iflscience.com/health-and-medicine/find-out-how-much-big-pharma-drug-companies-are-paying-your-doctor/

Above is a link to input your doctors name. Now some of the payments are mundane. A lunch or trinket like pens and magnets, but some are much more substantial.

Look for large sums given for endorsement speeches. That is where you begin to see the betrayal of your doctors integrity. Personally I can not trust a doctors judgement in treatment, if they are being "paid" by a specific pharmaceutical to push certain meds.

The medical community has declined greatly over the past 2 decades even as medical knowledge has increased.

I recently read an article about patient satisfaction should not factor into service rendered. I think they forget, they would not have jobs without patients.

I was particularly shocked by nurses comments on the post. Especially many of them making fun of patients and the pain levels we have. There are extremely effective pain meds that patients are denied because of government "DEA" interference.

I do not think asking for pain relief in a hospital setting is too much to ask. In fact perhaps the nurses and doctors should listen more to their patients instead of relying on chart numbers.

The decline of care and treatment is dismal.
We are treated like guinea pigs, worse even because we do not have animal rights activists proclaiming against our treatment.
In 2016 at least 111 deaths are related to Lyrica. The big opiate replacement drug.
450 deaths a year are ascribed to Tylenol. 50,000 acetominophen overdoses happen each year. Tylenol is toxic to your liver. Yet, it gets basically a safe pass. "Acetaminophen is the nation's leading cause of acute liver failure, according to data from an ongoing study funded by the National Institutes for Health. Analysis of national mortality files shows about 450 deaths occur each year from acetaminophen-associated overdoses; 100 of these are unintentional." Asch.org

Most people will simply say "any drug poses potential harm." This is true. However, the fact that certain death or injury causing drugs are still widely distributed without vivid warnings is unexcusable.

Especially when the same people advising use of otc or prescription drugs other than opiates are not forthcoming with the risk. In fact when exhibiting symptoms of Lyrica toxicity I was advised to continue usage. I quit taking it. It did not help my IC pain and in fact made it hurt worse.

We must demand our voice be heard. Heard by medical professionals. Heard by lawmakers. Heard by others suffering this horrific disease.