IC Disease

My brother-in-law died this morning at 10:30 a.m. and one of the greatest men I have ever had the privilege to know is gone from my life.  I wish I could explain to those who didn’t know him what he was like and what it was that made him so special.  He was the type of person who would give you the shirt off of his back, not think twice about it, and go back to working or doing whatever it was he was doing.  And he was always doing something for somebody.  He lived for his family and he doted on his wife like no man I have ever known. 

He had a terrific sense of humor that he still carried up until the last few weeks of his life.  The pain and the destruction of cancer finally took that from him and he became a shell of the man he used to be.  He loved to pick and joke with me and we would have a ball cracking jokes with each other and with me acting like a dumb blonde around him. 

He left behind a grieving wife, two children, two grandchildren and a slew of nieces and nephews who all thought he was the greatest.  We will all miss him terribly and there will always be a void in our family. 

My brother-in-law is dying from cancer and he is actually living his last few days now.  He has been battling esophogeal cancer now for almost two years and it finally beat him.  He has been an extremely strong person throughout his entire battle with cancer and our entire family has watched a strong, big man of 251 pounds widdle down to 100 pounds and become just a shell of the person he once was.  It has been extremely difficult to watch his wife deal with the reality of his dying as well. 

Dying is never easy whether it is someone dying quickly or slowly, as is the case with my brother-in-law.  I think personally it is a little easier to deal with death when it happens quick.  It’s as though we are all just waiting for the phone to ring, waiting for him to go.  It’s an extremely nervous time and while we would rather have him alive and well, we pray that he doesn’t have to suffer any longer. 

He was told Wednesday that he probably wouldn’t make it through the night because he did not have a blood pressure registering.  But then the next morning his blood pressure was back to normal, but he is in what the nurse is calling “a coma”.  He can’t talk to us but he can hear what we are saying to him.  Now the nurse is saying that he won’t make it throughout the weekend. 

The family has been sticking together throughout this whole ordeal and the love is apparent within our family.

I used to get frustrated whenever someone would make an ignorant or stupid comment to me about IC Disease or one of the other chronic illnesses I suffer from.  Do you ever notice how someone who has no idea what it’s like living with a chronic illness seems to have all the answers and thinks they know everything there is to know about what you are going through?

Over the years I have started to try and educate someone when they start rambling off to me about what they “think” it’s like for me living with these problems daily.  I couldn’t even begin to count how many times I have heard that I am sick because of stress, poor nutritional choices and not having a positive attitude.  People who don’t even know me try to tell me I’m sick because of my attitude when they have no clue what I am like.  Sometimes now I will even laugh because it gets ridiculous.

If someone doesn’t understand what you are going through, try to educate them a little.  Don’t bore them to tears with every fact you know about IC Disease but give them the highlights, what the pain feels like, how many times a day you go to the bathroom, & how having the illness affects every part of your life.  No one can ever fully understand what it is like living with an illness like IC Disease unless they have it also, but the person you are educating will at least be made aware of the proper information.

Something else I do is direct people to websites, blogs and online resources that deal with IC Disease.  The most powerful resources are patient’s own personal blogs where they detail the suffering and daily life with the illness.  So if you know someone who doesn’t get it when it comes to your illness, educate them!

I found another great IC Disease friendly recipe that is a great pasta side dish - Fettuccine Alfredo.  If you try this recipe, let me know what you think!  

IC Friendly Fettuccine Alfredo

• 12 ounces fettuccine
• 1 cup evaporated skim milk
• 1/2 cup half and half
• 1 1/2 cups grated fresh Parmesan cheese
• 2 tablespoons butter, cut into small pieces
• 2 tablespoons fresh chives, snipped

1.  Cook pasta according to package directions. 

2.  In a medium saucepan, heat the milk, half and half, and butter over medium heat only until the butter is melted and the mixture is hot.

3.  Gradually stir in 1 1/4 cups of the Parmesan cheese. Cook and stir just until the cheese is melted.

4.  Drain pasta and add to the cheese mixture.  Toss pasta until well coated.

5.  Put pasta on plates to serve and sprinkle with the remaining 1/4 cup of Parmesan cheese & chives. 

This recipe makes 6 servings.

I have had a Squidoo lens for quite a while and I can’t believe I forgot to mention that on here!  My lens is called Living With Chronic Illness and it lists articles, websites, feeds, and other great information to this site, my Fighting Fatigue website, and to other great chronic illness sites across the Internet. 

Want to start your own Squidoo lens?  Just visit my Squidoo page and you can sign up for your own lens there! 

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:

• Print out the About Fibromyalgia handout that lists all the facts, symptoms, diagnosis and other important information about Fibromyalgia.
• Invite your friends, family and healthcare providers to take the Pledge to Care.  The NFA’s Fibromyalgia Pledge to Care, launched on January 24, 2008 at the National Press Club in Washington D.C., is designed to encourage others to join the NFA in its national advocacy efforts. There is a Pledge to Care for family and friends and one for healthcare providers. 
• You can also send an e-card to remind others and to raise awareness for National Pain Awareness Month.  Just click this link HERE to send an e-card to everyone on your email address list.

Welcome to the August 25, 2008 edition of the IC Disease Health Blog Carnival #3. 

Chronic Illness

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.”

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.”

Fitness

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.”

Health

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”

Mental Health

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.