Wednesday, May 8, 2019
Seeking your "horror" stories.
Thursday, November 29, 2018
CDC- Life span decreasing due to Suicide and overdoses
The CDC does not understand why suicides have risen. Shock shock they live in a bubble of falalala...
Well let me edify this situation Dear Idiots at the CDC and your friends with the DEA and FDA.
It is people suffering like me who have no hope of getting pain meds long term to give us a quality of life. The more the government prevents access to obtaining prescribed opiates the more people will seek street drugs and or choose suicide.
Seems to me the CDC needs to go back in History and realize that there were far fewer od's and suicides per capita when opiates were not restricted. People are desperate for relief.
https://www.cbsnews.com/amp/news/cdc-us-life-expectancy-declining-due-largely-to-drug-overdose-and-suicides
Tuesday, May 29, 2018
Desperate Measures -Suicide should not be the measure needed for appropriate care response
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4:30 AM (6 hours ago)
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https://inews.co.uk/news/health/cystitis-bladder-removal
Zara Bough’s painful bladder condition has left her bedridden for months. Claudia Tanner 3 weeks Thursday May 10th 2018 Zara Bough, a 32-year-old woman from Oxfordshire, has shared how she has chosen to have her bladder removed after interstitial cystitis drove her to try to take her own life. She has suffered with agonising pain and has needed to go to the toilet up to 60 times a day since she was a teenager. The chronic condition, which causes the bladder to swell, caused her to be completely bedridden for three months and often leaves her unable to walk without the use of a stick. The condition has severely affected her life She says having interstitial cystitis has caused her depression, forced her to give up her social life and a career working with children and made relationships impossible.
After the annual operations to stretch her bladder she had for a decade stopped being effective, the bakery worker says her increasingly debilitating symptoms led her to opt for the drastic surgery. The procedure will create a replacement bladder from a section of her bowel. A catheter (a thin, plastic tube) will run from the new bladder (called a neobladder) to the skin of her stomach to allow her to pass water, appearing like an extra tummy button. The 32-year-old says interstitial cystitis left her needing antidepressants. Zara says the operation was a “last resort” and is hoping the major operation will give her her “normal life” back. She is now speaking out in a bid to remove the stigma of living with a bladder problem. Zara, from Banbury, told i: “Interstitial cystitis is such a little-known condition. It’s nothing like the common bacterial cystitis many women get.
“Living with it is very isolating and lonely. I felt embarrassed and kept it a secret for years but now I want more people to be aware and understanding of what living with the condition is like. “I’m scared of the operation to remove my bladder and when I first found out about it I was horrified. But things have got so bad now it’s my only option and I’m excited at the thought of having a normal life.” Life wasn’t worth living Zara had suffered with bladder control problems since she was a toddler but doctors dismissed them as a normal part of growing up. But when she was 13 she began experiencing severe pain that left her in tears. After years of tests, she was finally diagnosed aged 21 with interstitial cystitis, also known as painful bladder syndrome, which affects an estimated 400,000 people in UK, the majority women.
The disease causes chronic inflammation or irritation of the bladder wall, resulting in intense pelvic pain, sudden, strong urges to pee, needing to pee more often than normal and waking up several times during the night to go to the toilet. Zara managed to achieve a degree in childhood education but had to give up her nursery job because rushing to the toilet so often meant she couldn’t supervise children properly. She tried multiple instillations – drugs that are introduced into the bladder by catheter – but they failed to provide relief. Zara says the debilitating condition has forced her to give up pole dancing. Over the years her condition deteriorated to the point she felt life wasn’t worth living. “I used to go pole dancing and I travelled a lot, but now it’s so bad it’s a major struggle going to the shops,” she said. “I’ve lost a lot of friends because I miss out on social events. I can’t date anyone because I can’t do the things they want to go out and do. Sex is painful too.
“Last year it all got too much for me and I attempted suicide because I felt I just couldn’t go on like this.”
What causes interstitial cystitis? The exact cause of interstitial cystitis isn’t clear, unlike other types of cystitis. Several theories about the possible cause include: Damage to the bladder lining, which may mean urine can irritate the bladder and surrounding muscles and nerves. A problem with the pelvic floor muscles (used to control urination). Your immune system mistakenly attacking your bladder. An allergic reaction. Source: NHS Direct Hope for the future Zara is now on the waiting list for the procedure, called a cystectomy with a Mitrofanoff procedure.
She also hopes people will change their attitudes towards people with “invisible illnesses”. “I can’t go out of the house unless I plan and know where I can access a toilet. I have a ‘Just Can’t Wait’ Card provided by the charity Bladder Health UK yet people can still be so rude. “I’ve been refused to be allowed to go to the toilet in shops and other people queuing in toilets have told me ‘Well I need to go to the loo too.’ “I work at Co-op Bakery and luckily my boss has been amazing and allows me time off when I need it. “Hopefully my new bladder will mean a new life.” For support with bladder problems, visit Bladder Health UK or call the helpline on 0121 702 0820.
Read more at: https://inews.co.uk/news/health/cystitis-bladder-removal
Pharmacy limit policy
Yet another weapon is being leveled against, we whom suffer chronic disease. That is pharmacies CHOOSING to not fill an entire prescription. As if by doing so we will magically be cured. You are not helping us. You are compounding our already difficult lives with even more nonsense. My bladder will not stop hurting, I wont sleep better, my back wont spasm less, my joints wont stop dislocating. Stop playing this game you foolish pawns.
Tuesday, May 22, 2018
Why are women treated so poorly by physcians?
I was suffering then. I am still suffering 25 years later. When I read"does not affect patients sleep", when in fact I was saying Im getting up multiple times a night, on the questionarre done at same visit and in fact told doctor it was affecting my sleep, it infuriates me.
When I am told I just need to accept my pain and live with it ( Im not dead) , I want to kick them in the balls repeatedly and tell them live with it.
If this was diabetes no doctor would hesitate to treat.
Men generally are given pain meds while women are not. I can not tell you how often a male with IC has said just get doctor to prescribe a narcotic pain med, not because they are jerks, but because they themselves were immediately prescribed a pain med.
It is a shameful pathetic and barbaric practice.
http://www.bbc.com/future/story/20180518-the-inequality-in-how-women-are-treated-for-pain
Thursday, May 3, 2018
Dr Kristine Whitmore
MONURAL, has ASPERTAME.
Also your vaginal valium has gabapentin and baclofen, both of which are shitty.
Look if you are claiming to be the top specialist in the IC industry of patient shuffle, and you are going to preach diet hand me a list of garbage diet guidelines and the prescribe a med with a chemical that IC patients have extreme sensitivity too, why bother?
Why is it so hard to understand that my bladder does NOT WORK. You do not have a miracle cure and honestly in 25 years the IC specialists, seem dumber than the primary care doctors.
Let me tell you what IC patients CAN NOT EAT.
WHEAT
DAIRY
ICECREAM
CHEESE
SODA
TEA
COFFEE
BLUEBERRIES
APPLES
PEARS
BANNANAS
RICE
CORN
MARSHMALLOW ROOT( DIURETIC)
NUTS
AVOCADOS
ONIONS
POTATOES
CONDIMENTS
HIGH OXALATE GREENS
CRANBERRIES
OATS
STRAWBERRIES
GRAPES
POMEGRANATES
ANY SUGAR
ANY SWEETENER
VITAMINS ESPECIALLY B VITAMINS
CHERMOYA
DRAGONFRUIT
BROCCOLI
CABBAGE
CARROTS
EGGPLANT
TOMATOES
EGGS
WINE
BEER
LIQUOR
CANDY
CHOCOLATE
POPCORN
CEREAL
BEEF
PORK
CHICKEN
TURKEY
SHELLFISH
FISH
CITRUS FRUITS
FRUITS OF ANY KIND
PROCESSED FOODS
PINEAPPLE
PAPAYA
BEANS
HONEY
BUTTER
MARGARINE
OIL
CRACKERS
CHIPS
GUM
SUGARFREE ANYTHING
SUGAR ANYTHING
CAKE
BREAD
CORN TORTILLAS
PEPPERS
KOMBUCHA
KIMCHI
CINNAMON
Forget any fastfood
Forget packaged food
We can eat pumpkin but only plain; baked or steamed.
Raw Pumpkin seeds
Maybe lucky to eat mulberries in small quantity.
Yellow squash.
Chaote
Zuchinni squash
Acorn squash
Spaghetti squash
So yeah squashes.
So lets get real. Bladders being removed with a pouch not a neo bladder are a great option for us. Especially if you have suffered for 25 years.
My career is shot.
My sex life is nil.
My activity is interupted.
So quit the fucking games and play right. Either actively do something or find a different disease to attach yourself too.
John Hopkins Dr. BIVILACQUA
ARROGANCE AND LIES
I have been yoyoed by doctors for many years, the past 3 have been the absolute worst. I have seen specialists, who seem to completely not understand IC issues at all.
1. The complete lack of appropriate pain management. No guys injections are not going to cut it. Thanks for causing me worse pain and weight gain with that prednisone that I specifically said do not give me in an injection.
2. Not listening. It is like they say words but their words are basically a template of tired bullshit cliche. Fucking A. I have tried everything except narcotics. And you do not prescribe those.
3. I drive hours for appointments and nothing is done. Im lied too by multiple doctors. They do not listen to me. They prescribe meds that make me sick EVERY TIME I HAVE TRIED THEM.
4.I do not need a god damn psychiatrist nor do I need anti-depressants. Fuck you. It is a load of horseshit to do that to an IC patient. We are peeing blood and bladder lining. How the fuck is a session that gets interupted every 10 minutes for the toliet going to help me? Fuck the waste of time and money.
5. If you do not want me as a patient, then just fucking say it. Do not be that asshole who sends me to another asshole who also gives me a bullshit line. I am beginning to think you all got degrees from "asshole clown university."
6. I will get rid of my bladder. Either one of you pricks can do it or I will do it myself. So not, kidding, at all.
7. Stop treating myself and other IC patients like we are mental imbeciles. If one more doctor pats my back and says keep trying, I may just punch them.
8. If you know I am driving 5 fucking hours too see you and you know you are only going to say sorry I wont help, then just do me a favor, tell me that shit on the phone. I dont have the money or energy to make trips that result in more stupidity from your end.
6. I dont want your fake empathy. I dont want your gaslighting, narcisstic, pedantic treatment either.
7. If you screw up fucking be honest.