IC Disease

I found some astonishing statistics a while back on the various aspects of chronic illness.  One statistic that really stood out to me is that the divorce rate among the chronically ill is OVER 75%.  Why did this statistic stand out to me?  Because my first marriage ended partly because of my ME/CFS & Fibromyalgia, even though I didn’t  know that I had FM at the time.   I have been happily married now for the past 10 years and we have been together a total of 14 years and BOTH OF US have chronic illness problems.  My husband has heart problems.  He has had triple bypass surgery, stents placed in his heart and has had at least 7 heart attacks.  So what is the divorce rate statistics when both partners are chronically ill?  In my opinion, I think the divorce rate would be lower because the spouses would understand each other better and would understand better what each one was going through.  That is how it is in our situation.

This high statistic for divorce proves that when the vows “for better or worse, in sickness and in health” aren’t taken as seriously as they should be. 

Topical gabapentin has been found to be a well tolerated, effective treatment for relieving the pain of localized and generalized vulvodynia, according to a report in the September issue of Obstetrics & Gynecology.  According to this video from Reuters Health, the results of this study come from the research of 19 women with generalized vulvodynia and 32 women with localized symptoms of vulvodynia.   The study used 2% - 6% gabopentin.  Treatment with gabopentin of 8 weeks on the test subjects found that the average pain score was reduced from 7.26 to 2.49.  Approximately 80% of the women achieved results that were 50% or greater.  You can watch the video and find out more information by clicking below…

Internet TV for Doctors

A family member of mine was diagnosed with IC Disease in 2000, which was three years before my IC diagnosis.  It is not a blood relative of mine, but she is a relative through marriage.  She has also had many back problems over the years and she has additional symptoms that are not usually found in IC patients but are similar to those of Vulvodynia, but much more severe.  Her chiropractor told her her vaginal pain symptoms are coming from back damage but she can’t find a doctor who will admit that this is the case.  My family member has thoroughly researched IC Disease and Vulvodynia but can’t seem to find where some of her symptoms match either illness.

She goes to the restroom every 10 - 15 minutes, but it is not burning pain or pressure as seen in IC patients that makes her have to go that often.  She gets intense, extreme pain that she said feels like a knife.  She can’t stand long enough to wash dishes because the pain gets so bad for her.  When she lies down on her side, the pain will get better.  With IC Disease, the pain doesn’t improve with lying down.  Any ideas what this could be and if it could be something in her back like she and her chiropractor believes?  Her chiropractor told her that it is the area in the lower spine between LR-L5 that would cause the vaginal pain.

Out of all of the food groups, fruit is the category that is most limited to Interstitial Cystitis patients.  This is because of the citric acid that is found in many fruits.  Here is a great recipe for mock applesauce you can make that uses pears.  Good luck with this one - I hope it is a good recipe for you!

Mock Applesauce (Pear Sauce)

• 8-10 large ripe pears, peeled, cored and sliced into small chunks
• ½ cup water
• 11/2 tsp ground cinnamon
• ½-1 1/4 cup sugar, depending on how sweet you want the final taste to become-the sugar can be added as the recipe cooks to adjust for sweetness

Combine all ingredients in a large, heavy bottomed pot and cover. Simmer over low heat for at least an hour, stirring frequently.

You want a very soft texture so it’s perfectly fine to let this simmer for several hours or alternatively cook it in a slow cooker for 6-8 hours. Once prepared mock applesauce will keep covered in the fridge up to one week, or frozen in a freezer proof container for 3 months. Delicious warm, at room temperature or cold.  This recipe makes about 2 cups worth of pear sauce, depending on the size of your pears.

I was just hired to work 12 hours a week at a major supermarket chain in our area.  I have not worked for someone else for 6 years and I am a little nervous.  I will be working only as a cashier because I fear that any of the other jobs would be too physically challenging for me.  I have been wanting to attempt going back to work a few hours a week for quite some time now but fear kept stopping me.  What if I can’t do the job?  What if I have to call in sick too many times?  What if my IC Disease acts up while I am working on the cash register?  What if my chronic fatigue syndrome keeps me from getting out of bed to get ready for work?  I finally realized though that I can’t live by the “what ifs”.  I have to try this for me.  I need adult interaction and I deserve to do something for me. 

What’s the worst thing that can happen by trying?  If I can’t physically handle the job I will just have to quit.  But I feel that I need to at least try.  I hope it all works out okay!  I start next week.

IC Disease patients may find that they have additional symptoms that are brought on by food allergies.  Common food allergies found among those with IC Disease include allergies to wheat, rye, barley, oats and corn.  IC patients may also find that they are lactose intolerant and have milk allergies.  This can cause severe symptoms. 

While a yeast syndrome has not been “medically proven” and there is a lot of controversy over the issue, there are many IC patients who have found relief from food allergies by removing these ingredients from their diets:

• Yeast
• Sugar
• Cheeses
• Molds
• Alcohol
• Fermented foods

You should always check with your physician if you believe that you have food allergies or before you change your diet.

As an IC patient, now you have the chance to do something to help raise awareness!  There is a new initiative called the “123 IC”.  The “123 IC” reflects the three major symptoms of the chronic bladder disease:  pain, urgency and frequency.

To participate in this great IC initiative, take the following steps:

1.  Visit www.AllAboutIC.com/AllAboutIC/123IC/ to sign a petition of support.

2.  Enter for a chance to win one of 3 brand new iPods.

3.  Please forward this to 3 friends and spread the word.  The more who participate, the better!

If you have IC, you will also have the opportunity to submit words of support to other people with IC.  Based on these entries, 3 IC ambassadors will be selected for IC Week in October 2008.

I have started the long, tedious project of writing my first book.  Writing a book has been a dream of mine for a long time and I have started to put my plan into action.  This is a very difficult process for me because I am new to this whole process, I am scared and nervous, but it is something I feel I need to do to continue on my healing journey in chronic illness.

My dream and goal is to have a book that is successful and helps others in their healing journey of chronic illness, but if it’s not I will still be proud of what I have done because it takes a lot of guts to put your life story out there.  It takes a lot of guts to reveal all of the insecurities and feelings that I have experienced over the years.  To me it feels like it is the next step for my life to share with others how I have dealt with multiple chronic illnesses (ME/CFS, Fibromyalgia and IC Disease).

If you have attempted to write a book, are currently writing a book or have had a book published please share your knowledge and experience with me!

Welcome to the September 22, 2008 edition of the IC Disease Health Blog Carnival #4. 

 Sandra Ahten presents The Reasonable Diet posted at Sandra Ahten, saying, “Learn How can we make healthier dieting and weight control a source of pleasure instead of duty? How can we, as Thoreau suggests, take it upon ourselves and bring happiness to this area of our lives?”

chronic illness

Shaula presents Lost Days posted at Your Mileage May Vary, saying, “One of the keys to happiness is letting lost days be good days.”

Abby Freedman presents Am I people’s worst nightmare? posted at i pick up pennies, saying, “After reading a lot of personal finance blogs, I realized that what most people consider “emergency” or “dire straits” is what I consider to be, well, my life. And you know what? It’s not so bad. I’m surviving. I’m even chipping away at debt. Why, I wonder, does fear shape our society’s notion of a good life?”

chronic pain

Joe Lasiter presents The Alexander Technique for Back Pain posted at Natural Pain Relief, saying, “Back pain is a common condition among Americans today. Sometimes, alternative therapies can help you naturally relieve back pain, such as acupuncture or massage therapy.”

disease

Barbara Schreiber presents Plants that Fight Cancer posted at Britannica Blog, saying, “Intriguing blog post about cancer-fighting plants.”

Sandip Tripathy presents 101 Ways to Rid Yourself of Acne posted at RN Central.

fitness

fitnchic presents Cravings - Your biggest motivator :: FitNChic.com - Get in Shape Fashionably :: posted at FitNChic.com - Get in Shape, Fashionably!.

Sylviane Nuccio presents The 5 Diets That Don?t Work posted at Yourwellness101’s Weblog, saying, “America is getter more overweight as time go by. Finding the right weight loss program is not easy. What can you do about finding the right program for you.”

Piotr Stepien presents Raw Vegan Food posted at we overstep, saying, “What seemed to be an extreme diet is easier and more efficient than a regular diet.”

Health

Randy Powell presents Turmeric: Miracle superfood? posted at Eating-Veggies.com: Alkaline Diet blog.

Jose DeJesus MD presents Medicare Pilot Personal Health Record Program posted at Physician Entrepreneur, saying, “A pilot Personal Health Record (PHR) program will be rolled out next year in Arizona and Utah for Medicare patients.”

Usman presents How to create your own fat loss diet plan posted at Burn Fat ‘n’ Build Muscle.

Aparna presents A pillow to wipe out wrinkles posted at Beauty and Personality Grooming.

Kristen McCarthy presents Menstrual Suppression is the New White posted at this-sustainable-life.com, saying, “This season menstrual suppression is the new white. Designer oral contraceptives like Seasonale are the latest in cute pink pills to target the Western woman. No more mood swings, cramps, or unexpected whoopsies during your weekend getaways.”

Janelle Fisher presents This is going to get brutal… posted at Not Gently.

mental health

Alaia Williams presents Get Organized, Get Healthy: Health Issues Causing Disorganization & Clutter posted at One Organized Life Blog, saying, “Which came first - the disorganization? the depression? the fatigue? This article provides insight and suggestions from a woman who has been through it all”

Anmol Mehta presents Potent Yoga Breathing Exercise to Increase Energy & Treat Depression posted at Mastery of Meditation, Enlightenment and Kundalini Yoga, saying, “Simple yet powerful Yoga Breathing exercise to help treat depression.”

Mike Wheeler presents Deep Transcranial Magnetic Stimulation posted at Brain Stimulant.

Piotr Stepien presents Try It On Everything - EFT movie review posted at we overstep, saying, “There is a little technique that can heal almost everything.”

That concludes this edition. Submit your blog article to the next edition of the IC Disease Health Blog Carnival using our carnival submission form. Past posts and future hosts can be found on our blog carnival index page.

Being a woman is hard enough, then to add IC Disease on top of PMS….not a good combination.  Ask any women with Interstitial Cystitis what that “time of the month” is like and you will likely get an ear full about the increase in symptoms:  more pain, more pressure, more urinary frequency, and just plain more misery.

I am not even 40 yet but I welcome the day that menopause kicks in and I keep wishing that I would go into menopause early so that I wouldn’t have to deal with the extreme misery of getting my menstrual cycle each and every month.  So what’s a menstruating, miserable IC women supposed to do each and every month to relieve those terrible symptoms?  Here are a few things that I have found to help:

• Break out the heating pad and use it as much and as long as necessary.
• Have pain medication on hand that is stronger than Tylenol, Motrin or Advil to get through the severe pain.
• Take lots of hot showers and let the warm water run down your abdomen and back.
• Take off work if necessary and rest.