IC Disease

The FDA is warning the public and healthcare professionals about the serious complications that has been associated with the use of surgical mesh used for urinary stress incontinence and pelvic organ prolapse.  The mesh is placed transvaginally in a minimally invasive procedure. 

Over the past few years the FDA has received approximately 1,000 reports of complications.  According to the founder of the ICN Network, these complications include:

• erosion of the mesh through the vaginal epithelium
• pain
• infection
• recurrence of incontinence
• recurrence of prolapse
• urinary problems
• bowel, bladder, & blood vessel perforation during insertion
• vaginal scarring that led to decrease in quality of life due to pain

To treat the complications, IV therapy was used, blood transfusions, draining abscesses, and other surgical procedures needed to remove the mesh.

For more information, click the link below:

FDA MedWatch Safety Alert. Transvaginal Placement of Surgical Mesh. October 21, 2008.

Shrimp is one of my favorite foods but the seasonings often used on shrimp are a big no no for Interstitial Cystitis patients.  Here is an IC friendly recipe for Shrimp & Broccoli Alfredo.

• 1 pound shrimp
• 1 package fettucine
• 3 garlic cloves
• 1/2 cup butter
• 8 oz. package of cream cheese
• 1 cup milk
• 1/2 cup shredded Parmesan cheese
• 1-10 oz. package frozen broccoli florets
• 1/2 teaspoon salt
• dash of black pepper

Saute shrimp and garlic in butter in skillet. Remove and keep warm. In the same skillet, combine the cream cheese, milk and Parmesan cheese. Cook until cheeses are melted. Place broccoli in saucepan with 1 inch of water. Bring to a boil. Cover and simmer for 6-8 minutes.
Stir broccoli, shrimp, salt, and pepper into cheese.

My vein surgery that was scheduled for this Wednesday has been postponed for at least three months.  You can read my previous posts on this subject here & here. 

My health insurance company won’t pay for the surgery until the doctor has tried other more “conservative” methods of treatment for at least three months.  I have to go in to the doctor’s office tomorrow to pick up my compression stockings.  The doctor’s office tried to explain to the insurance company that the problem has moved beyond the help of compression stockings and that surgery is my only option but they won’t budge.  So now I have to suffer in pain for three more months. 

I can see the insurance company’s point of view, but I also want to feel better and have pain relief.  I also feel that the doctor telling them that the problem is too severe for more conservative methods of treatment should have proven that it needed to be done.  Now I have to go through three months more of pain just to turn around and have surgery anyway.

March is National Endometriosis Awareness Month and in honor of this, I wanted to post a link to an Endometriosis petition that you can sign (thanks to Jeanne at Jeanne’s Endo Blog).  Approximately 89 million women worldwide suffer from Endometriosis and even with this large number, the illness is still under funded, neglected and under researched.  Most people do not understand or fully fathom just how debilitating Endometriosis can be for its sufferers. 

If you have a blog or a website, Jeanne is asking us all to post THIS LINK for information on the petition and to sign the petition.  It’s important that we help all of those with chronic illness no matter what it is.  Even if we don’t have the same illness as someone else, we all have something in common - we suffer together.

I signed the petition and I hope you will also.  Thanks!

Enjoy this past week’s post from Fighting Fatigue.  If you or someone you know suffers from Chronic Fatigue Syndrome, Fibromyalgia or related conditions, please send them to the website. 

Risk of MS Associated With Vitamin D Deficiency Plus Common Genetic Variant

Researchers have discovered that there is a risk of multiple sclerosis associated with Vitamin D deficiency when the person has a genetic predisposed factor.

Resources: Headache & Migraine Websites & Blogs

I’ve added more resources to the Resources page on Fighting Fatigue and this time it is websites adn blogs for migraines and headaches.

Symptoms of Perimenopause vs. CFS

This post describes the similar symptoms that occur with perimenopause and Chronic Fatigue Syndrome.

England Receives Funding To Study ME/CFS In Children

Funding is received by British researchers to study a much needed area of Chronic Fatigue Syndrome - pediatric ME/CFS. Hopefully these researchers will be able to find the answers to much-needed questions that will help child CFS sufferers worldwide.

The New Face Of Fibromyalgia: Webinar Announcement

The American Pain Foundation is hosting a webinar on Fibromyalgia Tuesday, March 10th. Click the link above to find out how to sign up and for further information.

Resources: Headache & Migraine Message Boards & Online Support

Links to message boards and online support for headaches and migraine sufferers.

Resources: Headache & Migraine Books & DVDs

More resources for headache and migraine sufferers - books and DVDs on the subject.

ME/CFS, Fibromyalgia & IBS News Around the Web

Latest ME/CFS, Fibromyalgia and IBS news around the Internet.

Resources: Pain Message Boards & Online Support Groups

More information I added to my Resources page - message boards and online support for those suffering from chronic pain.

NFA Fibromyalgia Medication Survey

The National Fibromyalgia Association is asking Fibromyalgia patients to complete a medication survey. Click the link above to take a few minutes to fill it out.

9th International IACFS/ME Research and Clinical Conference

This post offers details on the conference and how you can register as either a patient or as a healthcare professional if you would like to attend.

The U.S. House of Representative’s Energy and Commerce Committee approved the National Pain Care Policy Act of 2009 (H.R. 756). The legislation will now move to the full House for consideration and then travel to the U.S. Senate.

If signed, the National Pain Care Policy Act of 2009 would combat pain by authorizing a Pain Consortium at the National Institutes of Health (NIH) to expand research on causes and treatments for pain; providing comprehensive pain care education and training for healthcare professionals; creating a national public awareness campaign on pain management; and by authorizing an Institute of Medicine conference on pain management.

To read the full summary of the bill, click HERE. 

To encourage organizations and others to support this bill, click HERE. 

I have less than one week until my leg surgery and I can’t wait until it’s all over with.  I am in so much pain I just want to feel better.  I have been suffering from very extreme sleepiness, different from that of my Chronic Fatigue Syndrome, and I think a lot of it is due to being in so much pain.  I find that every free chance I get I want to lie down and take a nap and I hate feeling like that but my body is begging for the sleep it seems.  I have little energy to research for my blogs and I am finding that just getting through the day has become even more difficult than usual.  I hate not being productive.  I like to accomplish things and when I feel like this it’s almost impossible. 

I hope surgery is the answer and I feel better once the healing process is over.

I don’t know if you have seen this yet, but Google has created a Google Health resource that you can use.  Google says that your health information is safe on their site and that your information will never be sold or shared.  If you decide to sign up, be aware that hackers can figure out how to get around safety measures. 

I just found out about Google Health yesterday and was surprised to see that Google has went this route.  So now you’re probably wondering what Google Health is all about!  You can click here for more information and to sign up. 

With Google Health you can:

• organize your health information so that it is available all in one place
• gather medical records from pharmacies, doctors and hospitals
• keep your doctors current on your health status
• learn recent information about what’s going on in health news

It’s free to join and you can take a tour by clicking the link I included above.  Let me know if you try it out!  I’m still thinking it over.

Cognitive Behavior Therapy, or CBT, is a common form of non-conventional treatment that is used to treat patients with many different types of chronic illnesses and for chronic pain.  The definition of cognitive behavior therapy, according to Wikipedia is:

Cognitive behavioral therapy (or cognitive behavior therapy, CBT) is a psychotherapeutic approach that aims to influence dysfunctional emotions, behaviors and cognitions through a goal-oriented, systematic procedure. CBT can be seen as an umbrella term for therapies that share a theoretical basis in behavioristic learning theory and cognitive psychology, and that use methods of change derived from these theories.

As part of cognitive behavior therapy treatments, attention management is often included as one of the treatments. A recent study was done to evaluate the effects of attention management strategies in the treatment for chronic pain.  In this study there were six weekly 90-minute treatment sessions that were based on cognitive behavior therapy attention management manual describing techniques such as attention diversion, imagery and mindfulness exercises.

The outcome that was hoped to be achieved through this study was to have a reduction in pain related anxiety and hypervigilance to pain and decrease in pain impact of everyday life. Symptoms were self-reported by the study participants.

The results at the end of treatment, and at 3-month follow-up, show significant reductions in pain-related anxiety, hypervigilance and interference of pain. At the participants’ six-month follow up visit, reeduction in pain-related interference and anxiety was still seen. The results indicate that attention control skills can be a useful method to reduce anxiety short-term.

I am finding that the more active I am the more my IC symptoms act up.  When I am at work and I have to do a job where I am sent walking all over the store several times throughout my shift, I find that my urinary frequency increases tremendously.  Yesterday at work I was supposed to be a cashier, which I was, but I was also sent hourly around the store to make sure there weren’t any messes.  Each time I would make it about half way around and I would feel the need to urinate hit me suddenly and that familiar pain in my bladder returned. 

As long as I am standing and not moving too much at work, I’m fine and I can usually make it to my break without needing the bathroom.  It’s when I have to more around a lot that the problems begin.  I don’t discuss my disabilities, however, at work because I don’t want to be labeled as I have been in the past.  There is a stereotype that disabled or chronically ill people can’t ever do anything or don’t ever try to do anything and if they know all of my problems, they might be harder on me.  I’ve been down that route and I won’t let that happen ever again.  As long as I can keep a handle on the situation, I’ll continue.  If things start to get too rough physically I’ll just have to quit.