Posts Tagged ‘Education’

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The invisible red thread

February 1, 2012

There is an ancient Chinese belief that an invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but it will never break. That being said, I believe that everything happens for a reason and I am exactly where I am supposed to be in my life at this moment.

Setting the course

When I moved to Texas, following my permanent ileostomy surgery back in September, I ended back in the hospital within four days of my arrival. I was so sick at the time and did not even have the chance to find new doctors yet. I was overwhelmed with the Texas system along with having to relay all my advanced and extensive medical history to doctors I just met. Having to arrange for medical records from Wisconsin to be faxed here, and make dozens of phone calls with my surgeon in Wisconsin, only to find out there are doctors here unwilling to treat you because you were not in their insurance network. This all made for a very stressful and anxiety ridden 10 day hospital stay. Looking back, it was a strange blessing in disguise because I was forced to expedite everything in such a hurry that in a very short time upon arriving, everything was transferred here.

During the stay at the hospital, I was under the care of a GI doctor by the name of Dr. Rassa Shahidzadeh whom I immediately liked and trusted. During the 10 days, I spent long hours going over my health history and all the background of my illness with him, and and felt very comfortable with how he handled my treatment. When I was discharged from the hospital, I was told to follow-up with Dr. S, but unfortunately he was out of my insurance network and I was told to find another GI. I cannot describe the bitter disappointment. It was so frustrating to find a new doctor, go through all the background on my disease with him only to find that I could not see him post-hospital stay. It was a big letdown to say the least. So the search began to find a new doctor in my network.

When one door closes, another opens

It took some digging but I did find a doctor by the name of Dr. Balachandar. I set up an appointment to meet. Our meeting was very successful and I walked out of her office almost high with excitement and relief. She was wonderful to me; an excellent fit. And suddenly all the worry, all the anxiety and all the frustration led to this one moment and all I felt was an incredible weight lifted off my shoulders. Her demeanor and willingness to want to learn about my condition and history was inviting and open. Her gentle nature was very fitting with my personality, and she is good at explaining things. I ask a lot of questions, and I am grateful that she not only answers them all, but she gives thorough explanations and more than what I even asked for. She didn’t hurry me through the appointment like I have experienced in the past. Since I had to leave such great doctors behind in Wisconsin, it was a big relief to finally call Dr. Balachandar mine.

A lot has happened since I moved to Texas–some good and some not so good. But for the most part my health has improved considerably, and I am grateful that my better days are numbering more and more. Recently I had a small setback and ended up in the ER for a brief stay. My illness flared, and not only did it affect my tummy, it went into my joints. I had a follow-up with Dr. B this past Monday, and when I left her office it occurred to me while walking out to my car, that I had such a peaceful feeling. I always get so worked up about everything and somehow, someway this doctor calmed my fears. I was actually relaxed. Her interesting mix of modern medicine and Ayurveda healing practices are a welcome change to what I was used to before.

This is how it was it was meant to be

It is very difficult to leave trusted physicians who have walked along your path through so many trials of a chronic illness. It is harder yet to find another doctor willing to take on where those doctors left off, someone open to face the challenge of a complicated patient. I am grateful to have found such a doctor. It’s strange how things happen and when you step back you realize that maybe THIS ALL IS EXACTLY the way it was supposed to be, that every step on my path led me to this place, at this time of my life. These are the people I was supposed to meet. These are the people I am supposed to be with. I had to let go of some, but I gained others. It is kind of profound to think about how life leads you to people and places that are meant to come your way and you don’t even know it yet. It’s as if that invisible red thread has already sewn together the people you are meant to meet on this hidden life line, those who pass through your life temporarily and those who stay.

“An invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but will never break.” ~An ancient Chinese belief

~Nadia

Question: Have you established a good relationship with your doctor? Have you had to change doctors?

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The Equalizer by Stomaplex.com

January 23, 2012

In this video, Maggie models The Equalizer, an ostomy support product by Stomaplex.com. In full disclosure, Maggie was paid to create this video, and Nadia and I haven’t tried this product ourselves.

The Equalizer seems like a pretty handy product for getting a tight seal on your ostomy flange. However, at $34 it is significantly overpriced: it’s just a short length of clear plastic tubing, after all. You could go to any hardware store and buy a small length of plastic pipe that does the same thing: just look in the plumbing section (check out this short length of plastic pipe at Lowes for $0.61!). Just measure the width of your appliance (the ring, so you know how much space you have around your stoma), stroll through the plumbing section, and basically get a useful appliance tool for pennies.

Keep fighting,
~Dennis

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Keeping stress levels balanced when dealing with IBD

January 22, 2012

Here are some tips on helping deal with stress. Mostly intended to assist in dealing with stress when you have inflammatory bowel disease, but these are good tips for anyone. Although this is a serious subject, it became difficult to film this video at times. Many times I use bullet points on topics I want to cover, but it is difficult to think ahead of all the points I want to make. I show my frustration in the end of this video with a couple of bloopers!

“Give your stress wings and let it fly away.” ~Terri Guillemets

~Nadia

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Cookin’ With Nadia: Gluten free chicken tenders

January 11, 2012

Gluten Free Chicken Tenders

Chicken Breast
2 Eggs
2 Tbsp Poultry Seasoning
2 Tbsp Parmesan Cheese
4 Cups Gluten Free Rice Chex (or Gluten Free Corn Flakes)
Salt/Pepper

I demonstrate how to make this delicious meal.

“Eating is not merely a material pleasure. Eating well gives a spectacular joy to life and contributes immensely to goodwill and happy companionship. It is of great importance to the morale.” ~Elsa Schiaparelli

~Nadia

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What’s the difference? Temporary vs. permanent ileostomy

January 8, 2012

Besides the obvious difference–temporary being for short term, and permanent being forever–this video covers the difference between the type of surgery each of these are, as well as, the reasons why a patient may need temporary ileostomy surgery or permanent ileostomy surgery.

In some cases a patient may undergo temporary ileostomy surgery only to later have to undergo permanent ileostomy surgery–as in my case. Despite having two temporary ileostomies, I now live with a permanent ileostomy. In this video I talk about both.

“My life is my message.” ~Ghandi

~Nadia

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Exclusive interview with Ally Bain, creator of Ally’s Law, and her gastroenterologist Dr. Rubin

December 19, 2011

Recently we were contacted by WestGlen Broadcast Public Relations as part of a nationwide campaign to spread awareness in the inflammatory bowel disease community about Ally’s Law (known as the Restroom Access Act). Ally Bain and her gastroenterologist Dr. David Rubin offered us an exclusive video interview to spread awareness about this law. This was a phone interview with Dennis and I because we were all in different locations.

David Rubin is an associate professor of medicine, co-director of the Inflammatory Bowel Disease Center, and director of the Gastroenterology, Hepatology, and Nutrition fellowship program at the University of Chicago (UC).

Ally Bain was diagnosed with Crohn’s disease at age 11 and at age 14, Ally experienced a Crohn’s flare up in a department store and had an accident because she was denied use of the employee-only restroom. Since then, Ally has dedicated herself to raising awareness about Crohn’s disease and the rights of people living with the condition by creating “Ally’s Law.”

There are many resources where you can learn more about getting involved to help legislation pass this law in your state. Check out CrohnsAndMe.com as well as CCFA.org to learn more and find additional information.

We feel very honored to have been given this rare opportunity. We should all do our part and get involved in this movement because “everyone deserves restroom access.”

“Awareness is empowering.” ~Rita Wilson

~Nadia

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What a difference a day can make

December 11, 2011

There is a quote: “it doesn’t matter how slowly you go as long as you do not stop”…sage words from my daddy on the day I ran my first 5K. Not just any 5K, but a 5K with a 14 obstacle course and a mud pit to run through. Yes, a grueling sequence of obstacles set along a 5K path that I decided to challenge myself to do, while I was in recovery from my ostomy surgery back in September.

When I had surgery back in September, I decided at that time, that I needed to set goals to try to get my life back on track. I was a wreck. Emotional and physical mess. I had to try to find ways to restore myself back to “me,” so to speak. The old “me” never really ran a 5K, but whatever…ha! I wanted to try, and I think it helps too, toward building my self-esteem which was damaged quite a bit. My confidence needed some repair as well. Setting goals and achieving them seemed like the best plan to accomplish this.

The best laid plans

It starts out small, setting goals to walk 10 steps from the hospital bed to the door. Then down the hospital corridor or around the nurses’ station until I was finally able to walk out the door of the hospital to the car to go home. Small victories. When I felt that my recovery was on par, I decided that I would start setting goals further out, ones to work toward. The idea of a 5K run came to mind. Upon researching, I found the Survival Race in Texas being held in December – exactly 3 months post-surgery. My first thought, “where do I sign up?” I figured 3 months would be an acceptable amount of time for recovery.

I bought a pedometer shortly after and started tracking how much walking distance I could put on in a day. Later on, I started shopping for an elliptical machine. Then, I began stretching and trying to condition myself to some level of fitness in order to get through this. I had a few setbacks along the way that started to concern me. I kept getting ill with so many infections, flu, colds, I had an abdominal abscess, and I kept having setbacks. I was worried that I would not be well enough to achieve this goal. But harder yet, only a few short weeks before the challenge, I was injured in a car accident. I was about to give up on the idea of doing this 5K. My body hurt so much, and I couldn’t imagine trying to go through this and make it to the finish line. I began to think that this was too soon after surgery, then having so many setbacks; I should probably bail out and quit.

But slowly, I began to improve. I started walking a course outside my house and kept going until I reached the 5K mark. I would jam to my tunes, and the time flew by. Then, I started to jog and my endurance built up and I felt confident that I could do this. I was just going into it thinking all I have to do is make it to the finish line. Don’t worry about the time, just finish. JUST CROSS THAT FINISH LINE!!

Race Day

The night before the race I was so nervous; I didn’t sleep well. I kept thinking about the day ahead and worrying about the obstacles; I researched all 14 and pinpointed the ones that I knew I could easily do and the ones that would be a bigger challenge for me. I kept thinking all along the way how this race is a metaphor for my life. There are all these obstacles, all these challenges, and I have to figure out how to navigate through them. I am not fortunate enough in life however, to know in advance what obstacles are ahead, but I think you get what I mean.

In this particular event there were tires to run through, a mucky river knee deep, muddy hills to climb, walls to leap, crawling under barbed wire through a pond, crawling through wet and muddy tunnels, climbing over wooden and metal structures, a rope wall I had to get over, a pit of paint balls I had to go through on my tummy, barrels to jump over, and a fire pit to jump across. Many times along the way I thought I wasn’t going to make it. I hurt myself, got afraid that I couldn’t do something, or that I would fall from the top of the rope wall—I sat at the top of the wall contemplating my descent. I got tired, cold, my asthma was making it a challenge to breathe, but at each challenge, I faced it, did it, and overcame it until finally, I came to the mud pit–the most difficult challenge of the entire course. It was a lake bed of pure mud that was waist deep. It felt and smelled like poo-(haha one must admit this really was the perfect metaphor for IBD!)

The mud pit was the hardest to overcome. Here, I struggled the most, I didn’t think I could get through, I lost my shoes and went through it with nothing to protect me, I got stuck and could not move, it was the part that slowed me down the most, and for a split second I stopped, looked up, and thought to myself, “I’m done-I can’t do this anymore.” This was the perfect analogy for fighting IBD. Still, I kept on going, and once I was able to make it out, I was still carrying the weight of 20lbs of mud on me through the rest of the course. Kind of like, how making it past the biggest hurdles, one still carries along residual weight of this illness. It doesn’t completely go away–sad but true. I have an ostomy appliance attached to my abdomen as proof and scars that will never heal.

Champion for a day

Finally after a little over an hour, covered in mud, blood running down my hand, and bruises on my body, I crossed the Finish line. I was never as physically thrilled to finish something in my life as I was to finish this. I.DID.IT…ME! It was my glorious, feel good, moment. I sank to my knees to thank God for carrying me to the finish line.

This race was tough, but then again, life is tough. Some of us learn this the hard way, but this challenge taught me something about life and about myself. I believe that no matter how hard something is, you eventually get through it. Unlike this race that ended in an hour, so many challenges in the path we walk through IBD take years to overcome if at all, but we celebrate small victories, good days, and overcoming the challenges. Sometimes we get to the end of a struggle and feel victorious. I also learned that even if I am afraid of the unknown or afraid of the challenge of what I am facing, if I have enough faith in myself to believe I can make it, I can, and most of all, I learned to not give up. I never gave up-I never quit. Even if it was only for a moment or a day that I could feel high on life for crossing that finish-line, to me, that moment was priceless. It took a long time to capture that feeling-I got to have it, and I earned it.

“Satisfaction lies in the effort, not in the attainment. Full effort is full victory.” ~Mahatma Gandhi

~Nadia

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Using smartphone and iPad apps for inflammatory bowel disease

December 6, 2011

Technology allows us some great tools to help track our symptoms using our smartphone, iPod touch, or iPad. In this video, I demonstrate a downloaded app called GI Monitor, which tracks symptoms, BM’s, meals, and pain/stress levels. You can use the information to show your doctor to give a better idea on your disease allowing the physician to give you better treatment. The beauty of the apps is that they take a lot of guess work out of trying to figure everything out and take off the burden of having to write down every detail.

“We’ve arranged a civilization in which most crucial elements profoundly depend on science and technology.” ~Carl Sagan

~Nadia

Question: How do you keep track of your symptoms?

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Tips for newly diagnosed with Crohn’s or colitis

December 5, 2011

Sara from A Girl with Guts provides tips for the newly diagnosed in this video. As most of us can remember, those beginning days after diagnosis are rough.

For those of you who have had IBD for awhile, this video still has some great tips for managing the disease. Unfortunately, there’s a lot of people out there who’ve had the disease for years but still aren’t competent at managing it.

Keep fighting,
~Dennis

Question: How long did it take after you were diagnosed before you started talking about your disease with others? Respond to this post with your story!

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Cookin’ With Nadia: Chicken Rice Dish ft. Dennis

November 29, 2011

Dennis visited me in Texas and we cooked this dish:

Ingredients:
Chicken
Rice
Salt
Pepper
Bullion
Celery
Onion

Watch the video to learn how to make this simple dish. A great dish to have when you are not feeling well.

~Nadia

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