I wanted to say thanks to the Drugs & Pharmacology for including my IC Disease post, Side Effects of Painkillers, in their tenth edition blog carnival. They do not accept all of the submissions they receive for their blog carnival so I feel honored that this site was chosen!
One of the first coping mechanisms someone with a chronic illness like Interstitial Cystitis has to develop thick skin. Why? Because you are going to find that most people don’t get it, never will get it, and will assume that their backache, headache, or whatever is worse than what you are going through. How can someone possibly understand the devastation of something like IC Disease when they haven’t had anything worse happen to them than the occasional cold or headache?
It’s also hard for people who do not have IC to understand how something can be chronic and never goes away. Most people when they get sick, there is an end in sight. With us there isn’t unless a miraculous cure is discovered. We find that our friends are there for a while but they soon tire of our complaints, cancellations, and we are soon forgotten about because we are no longer “fun” to hang out with. Family members soon tire of us as well and they assume we are just trying to get attention.
It can be a lonely road….developing a thick skin is the best way to survive with chronic illness. More tomorrow…
September is Pain Awareness Month and the National Fibromyalgia Association is trying to get the word out to everyone who suffers from chronic illnesses and pain disorders like IC Disease, Fibromyalgia and other diseases that cause chronic pain. One of the best things that we can do as patients is to help spread the word to others and to give them an idea what it is like living daily with these chronic pain disorders. Here are some of the ways the Fibromyalgia Association is recommending that us sufferers help spread the word about Pain Awareness Month:
Welcome to the August 25, 2008 edition of the IC Disease Health Blog Carnival #3.
Rachel presents Angular Cheilitis - Do Home Remedies Really Work? posted at Angular Cheilitis, saying, “Don’t let reoccurring angular cheilitis affect your life. Find natural remedies to cure the disease.”
fightingfatigue presents » Resources: CFS & Fibromyalgia Books/DVDs posted at Fighting Fatigue, saying, “Check out all of these great books and DVDs that are available on CFS and Fibromyalgia.”
fitnchic presents Wanna lose weight? Miracles don’t work :: FitNChic.com - Get in Shape Fashionably :: posted at FitNChic.com - Get in Shape, Fashionably!.
Zoe Anderson presents The Turned Off Beginner posted at thinkpilates.com, saying, “The key to getting past the slow stages in pilates.”
Joshua Seth presents Healthy Snacks posted at Joshua Seth Blog, saying, “Having a snack between meals doesn’t have to mean ruining your weight loss plan with a bunch of empty calories. There are alternatives to grabbing a candy bar or handful of chips”
axel presents Health And Food posted at axel g.
Sagar Satapathy presents 50 Quick and Easy Ways to Calm Your Anxiety posted at NOEDb: Nursing Online Education Database.
Heather Johnson presents Diabetes and Exercise – What you Must Know posted at Diabetes Notes.
VikramKir presents how to have safe sex! Tips to have Safe Sex posted at Thoughtfully Vikram…, saying, “Check few tips on having healthy Sex”
Toni Graybill presents Mercury poisoning in children leads to autism posted at Maximize Health and Wealth, saying, “Autism and vaccines: Truth or media myth?”
That concludes this edition. Submit your blog article to the next edition of the IC Disease heatlh blog carnival using our carnival submission form. Past posts and future hosts can be found on our blog carnival index page.
What a woman does after having sexual intercourse can affect how bad her IC Disease symptoms flare. As I have mentioned in my other posts on sex & IC Disease (please refer to Part 1, Part 2, Part 3 & Part 4 if you haven’t already read them), women will usually find their IC Disease symptoms flare 24 hours after having sex.
The 15 minutes after having sex are the most crucial for women where infection and inflammation can be greatly reduced. Women should urinate immediately after sex to help flush out any unwanted bacteria.
Women’s vaginal area swells after sex also by rinsing with a cool cloth or cool water to the area afterward will be helpful. Do not use fragranced soaps or shower gels, however. This can cause irritation.
Muscle relaxers and a heating pad can also help after sex.
Stella Pharmaceuticals in Canada has released some promising new information on a recent clinical trial of a drug called Uracyst®. The controlled clinical study was done through Watson Pharmaceuticals, a United States licensee of Stella Pharmaceuticals.
This study was a multi-centre, randomized, double blind, evaluation of the efficacy and safety of Uracyst versus placebo in patients with Interstitial Cystitis. This is exciting news for Interstitial Cystitis, as another new drug to help the condition may be available. Currently Elmiron is the only FDA approved drug for IC Disease.
The positive results shown from this clinical trial and pilot study will help Watson more forward with the next steps that will eventually lead to FDA approval.
To read more, click here.
There may be hope on the way for the many Interstitial Cystitis patients out there. A new drug has been developed by a urologic surgeon and researcher, Lowell Parsons, M.D. the University of California, San Diego Medical Center.
“What our team has identified is an experimental drug therapy that can provide pain relief to patients within 20 minutes,” said Parsons, professor of surgery at UC San Diego School of Medicine. “Depending on the individual, in my experience, one dose can last from 6 to 40 hours. The ability of the therapy to provide immediate relief is something entirely new for sufferers of interstitial cystitis.”
The new drug (which is currently in a phase 2 study) will be injected directly into the bladder through a catheter. It is a combination of heparin and an anesthetic. The anesthetic will provide the instant pain relief while the heparin will help to restore the bladder’s protective layer.
I used to inject Marcaine and heparin directly into my bladder. I guess this medication is sort of the same thing but all in one and stronger.
The new drug therapy combination has been licensed by UC San Diego Technology Transfer & Intellectual Property Services to Urigen Pharmaceuticals, Inc. for further clinical development and commercialization.
Parsons is responsible for the creation of Elmiron, which is the first (and only) FDA approved medication for IC Disease. Parsons began working on the creation of this medication over 30 years ago. It has been approved by the FDA for the last decade.
If you have IC but you like sweets, this great IC friendly recipes for Crunchy White Chocolate Drops will curb your sweet tooth without acting up your IC symptoms. Talk about having the best of both worlds! This recipe is great for the whole family to eat - not just for IC kids and patients.
This recipe is for a large group of people so feel free to half the recipe to suit you and your family’s needs. If you try this recipe, let me know what you think! 
Crunchy White Chocolate Drops
1. Melt the chocolate either by using a double boiler over medium heat or in the microwave. Be careful if you microwave the chocolate -the bowl will be very hot when you remove it.
2. In a large mixing bowl, add chocolate and all other ingredients listed above. Stir well.
3. Form small walnut-shaped balls out of the mixture. Place balls on wax paper or parchment paper. If you are making the whole recipe, make sure you have a big table prepared to place all of the drops.
4. Allow the drops to cool and harden. Place in a lined airtight container. They don’t need to be refrigerated and you can keep them for up to two weeks.
Options:
If you don’t want to make balls, you can pour the mixture into cake pans and let harden then cut like you would fudge.
Recipe makes about 90 drops.
As I have discussed in the previous posts on this Sex & IC Disease Series, sexual intercourse with your spouse can become very painful and your sex life can go down the toilet. But couples need to remember that there is more to intimacy than just having sex. Focus on intimacy and other ways to please each other without going “all the way”.
If you are unable to have sex due to your IC symptoms flaring, search for other alternatives that you can do as a couple where you are still getting some pleasure. Stroke and caress each other, kiss, and oral sex may be an alternative for you. For women, it depends on if they can handle any type of touching in the vaginal area. For men with IC, oral sex may be out of the question since they have the worst pain upon ejaculating.
This is the time for you and your spouse to research and to find alternatives. It can actually turn out to be fun for you and your spouse and in the long run bring you closer together.
Read the other posts in the Sex & IC Disease Series:
The IC Disease Health Blog Carnival deadline is quickly approaching so if you have a health article you would like to submit, you need to do so by August 22nd. The IC Disease Health Blog Carnival #3 will post on August 25th. You can click here to submit your favorite health-related posts.
Please submit only health-related posts. All others are automatically deleted. Thank you!
