IC Disease

There is a new IC study that is recruiting patients to study their sleep quality and Interstitial Cystitis symptoms.  A women’s health nurse practitioner with 10 years of experience treating IC patients and a doctoral student in nursing are asking for your participation in this innovative study.

The study is a 20 minute online questionnaire that is completely confidential.  Those who decide to participate in the study will be asked to answer several questions about:

• Interstitial Cystitis symptoms
• sleep habits
• demographic information

For this particular study, researchers are looking for women who:

• have a diagnosis of Interstitial Cystitis made by a specialist who performed a potassium sensitivity test or bladder hydrodistention.
• are between the ages of 30 to 60.

If you would like to participate in this study, please click the link below:

Sleep & IC Study

Here are the this week’s posts from my Fighting Fatigue blog.  I didn’t post as much this week because of not feeling well.  Enjoy reading them!

Fighting Fatigue CFS & Fibromyalgia Blog Carnival #4

This post is the fourth monthly installment of Fighting Fatigue’s blog carnival on CFS and Fibromyalgia. 

A New Year, A New Name

This post is about the Fair Name Campaign for changing the Chronic Fatigue Syndrome name to ME/CFS and explains how the program is working to date and how you can get involved.

Giving Thanks Even During the Bad Times

This post talks about giving thanks and being thankful and grateful even during the rough times we have with our health.

National Fibromyalgia Association:  Fibro-Friendly Exercise

The latest articles on exercises that are helpful to Fibromyalgia patients from the National Fibromyalgia Association.

Sign Petition for a European Recognition of Fibromyalgia

The European Network of Fibromyalgia Organizations is asking everyone to sign this petition to encourage European recognition of Fibromyalgia.

I try my best to post daily but this week I am having a major CFS flare that is leaving me basically bedridden and unable to do much of anything.  I had to force myself to get on the computer to just write this little bit but I wanted everyone to know what was going on if I don’t post for a few days. 

I have not felt well all week and with working I think I just threw myself into a worse flare.  I spent Thanksgiving day miserable and just wanting to be left alone.  I did go to the family dinner but I ate very little and disappeared downstairs so that I didn’t have to socialize and so I could just lie down and rest. 

I have to go back to work tomorrow so I am doing my best today to just take it easy.  I hope I am better by tomorrow.  I hope everyone had a nice Thanksgiving and have a nice weekend also.  I hope to be back posting daily again come Monday. 

I just read an article tonight that talks about how many people ignore symptoms of bladder trouble and that most people are not paying enough attention to what their bladder is telling them.  November is Bladder Health Month and urologists across the country want to make the public aware of many of the bladder problems people face:

Incontinence - More than 15 million people in the United States suffer from stress incontinence or urge incontinence.

Urinary Tract Infections (UTIs) - Approximately 40% of women and 12% of men will suffer from at least one urinary tract infection sometime during their lives. 

Lower Urinary Tract Symptoms (LUTS) - People who have an enlarged prostate can suffer from LUTS which causes frequent urination, the need to push or strain to initiate urination, nocturia and urgency.

Bladder Cancer - Approximately 53,000 Americans are diagnosed yearly with bladder cancer.  One symptom is blood in the urine along with frequent urination and pain with urination are also common symptoms of bladder cancer.

Bedwetting - Bedwetting may be caused by many several factors from age to neurological problems. 

Interstitial Cystitis - I was happy to read that IC Disease was included in this article.  To read more of the article, click HERE.

Female IC Disease patients typically will notice a worsening of their IC symptoms around the time of their menstrual cycle.  I know from own experience with PMS is so extreme that I have developed PMDD (pre-menstrual dysphoric disorder) and I have to force myself to get out of bed or to do anything the week before and during the week of my monthly cycle.  Women with IC will experience more fatigue, more pelvic pressure, more cramping, more burning upon urination around their period, but why?  What causes this to happen and what makes our lives so miserable around this time?  Estrogen is the answer.

When estrogen levels are at their highest, it is believed that mast cell secretion increases and this increases inflammatory reactions in the body. 

There are IC patients who say that their symptoms are actually better when their estrogen levels are at their highest and only worsen with the onset of their cycle.  Others complain of a worsening of symptoms at ovulation. 

It’s almost Thanksgiving and I have always made it a yearly tradition on my Fighting Fatigue website to write about what I am thankful for.  When you are chronically ill, it is so easy to feel depressed and to think that life sucks and there is nothing good in life to look forward to.  But that’s not true.  By making a list of what you have to be thankful and grateful for, you realize just how good you do have it and it is great for your emotional health.

I find that when things get rough, it is helpful to make a list of what is good in my life and what a better time than Thanksgiving to share it with everyone!  If you would like to add your list of things you are thankful for in the comments, please feel free to do so!  Here’s what I’m thankful for:

• A great husband
• An intelligent, well-behaved child
• A supportive and loving family
• Even though I’m sick, I’m healthier than a lot of other people
• The courage to continue to fight against chronic illness

Welcome to the November 24, 2008 edition of the IC Disease Health Blog Carnival #6.

disease

Heather Johnson presents 100 Everyday Habits for Your Health and Wealth posted at Medical Coding Training Online.

fitness

fitnchic presents 11 Facts to Prove that Elliptical Offers the Most Effective, Low Impact, Total Body Workout :: FitNChic.com - Get in Shape Fashionably :: posted at FitNChic.com - Get in Shape, Fashionably!.

Dean Moyer presents Aquatic Therapy for Back Pain posted at The Back Pain Blog, saying, “One reason athletes and otherwise healthy men and women develop lower back pain is that they often overlook important key elements of fitness; not the least of which are exercises specifically designed to lubricate your joints.”

Health

Alexandr B.S. presents Ways to Prevent Teeth Grinding posted at WorlDental, saying, “Bruxism is the term use to teeth grinding. This activity usually occurs during sleep at night or even in a day nap.”

Charles Chua C K presents Cancer Prevention – 10 Healthy Lifestyle Tips posted at All About Living with Life.

Nancy Miller presents A Few Good Stress Busters posted at Becoming A Radiologist.

marjorie presents Reduce Your Risk - Esophageal Cancer posted at Laurel on Health Food, saying, “Researchers from Kaiser Permanente Northern California found that eating a diet high in antioxidant-rich fruits and vegetables could significantly reduce your risk of getting cancer in your esophagus. These findings provide more proof that fruits and vegetables are powerful disease fighters.”

Nancy Miller presents Exercise Restraint – The Perils of Over-Exercising posted at Comments on: Top 100 Diet and Fitness Blogs.

Grace Young presents Breath Control posted at Grace R Young OT.

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.

Cream Cheese Caramel Apple Pie

• 2 pie shells
• 3 tablespoons cornstarch
• 3/4 cup granulated sugar
• 1/2 teaspoon ground cinnamon
• 1 teaspoon almond extract
• 1 teaspoon vanilla extract
• Gala apples - 6 cups peeled and thinly sliced
• 1/2 cup caramel topping
• 2 - 6 oz. packages of softened cream cheese
• Milk

Preheat oven to 400 degrees. Stir together sugar, cornstarch and cinnamon. Toss mixture with apples, vanilla and almond extract. Press softened cream cheese into bottom of one pie shell. Pour in apple mixture on top of cream cheese. Drizzle melted caramel on top.

Take second pie shell out of tin and use to create top crust. Flute edges by pinching with fingers or using a fork. Sprinkle top of pie with milk and then sprinkle liberally with cinnamon and white sugar. Cut four 1” long slices in top of pie to vent. Cover edges with aluminum foil to prevent burning. Bake 45 minutes.

I have been dieting since August and I first started with the Nutrisystem program.  I spent $600 and lost 10 pounds in two months.  That program got to be too expensive so I had to give it up.  I switched to the Alli weight loss program since I have family members who are having success with that method and I have lost 7 pounds in a few weeks.  Wow - what a difference!  I am eating 600 calories more a day than I was on Nutrisystem, have more of a variety of food to eat, and I am losing weight much faster. 

The only down side to Alli is that you can experience side effects, or “treatment effects”, if you eat too much fat.  Other than that it seems to be a pretty simple plan to follow. 

Here’s the recap from this weeks posts on Fighting Fatigue.   If you know anyone who has Chronic Fatigue Syndrome and Fibromyalgia, please send them to my website!  I have almost three years worth of information there on these illnesses. 

The CDC Gets Is Still Playing Games With ME/CFS Research Money

What’s the old saying?  A leopard never changes its spots?  Read about how the CDC is still pulling the same crap with ME/CFS research money as they did 10 years ago.

Fibromyalgia and IBS Around the Web

This post includes all of the latest information available around the web on Fibromyalgia and Irritable Bowel Syndrome.

Blood Test & Virus Diagnosis for CFS Coming Soon

Exciting news for Chronic Fatigue Syndrome patients!  Research is getting closer and closer to developing a blood test that will effectively diagnose CFS. 

My Headaches/Migraines Are Back Stronger Than Ever

I have suffered from daily chronic headaches for years and they are getting worse. 

Vitamin D Deficiency Linked to Mood Disorders In Women

Vitamin D Deficiency and its effects have been in the news a lot lately and more research is showing how it affects women’s health and mood disorders in women.