Let the School Bells Ring!

At the age of 41, I surprised my husband and children by announcing that I was going back to school for my Master’s degree. I had no idea how that would happen, where we would get the money, or even what I would major in. I can’t even tell you where the idea came from. It was only after the words came out of my mouth that I realized that I wanted to do it. My children were in high school and college, and I needed something that would propel me me into the next phase of my life.

Excited that going back to school was actually a possibility, I spent hours on the internet checking out dozens of programs in my area. I tested the educational waters and increased my self-confidence by taking some classes at the local community college to sharpen my computer and presentation skills. I was surprised to learn that graduate school was not as expensive as I had imagined and that my employer would pay for part of the cost. Eventually, I applied for the Health Communications program at Michigan State University (MSU)—about 80 miles from my house.

I can see many of you cringing as you read that. Yes, I am an IC patient and trust me, commuting 80 miles, one way for classes was a daunting thought for me also, but only one other major university was within an hour drive of my house, and they did not have any programs I was interested in. It helped that two of my children were at MSU during the time I was there, so enrolling in the Health Communications program gave me the opportunity to visit with them more frequently than I might have otherwise. The bottom line was that if I was determined to succeed, I could do it if I was willing to take it slow.

Whether you are already in school or if you are only considering it, there are many things you can do to make it easier on yourself, thus increasing your chances of success.

First, talk to the Americans with Disabilities Act (ADA) office of the university as well as your professors about your condition even if you are not currently on Social Security Disability. Having that information documented in advance makes it much easier to ask for accommodations in your schedule or assignments. Unfortunately, I learned this lesson the hard way. I ended up a half hour late to class one day because my bladder was overly fussy, and I had to make three restroom stops before I got to school. Explaining afterwards was much more uncomfortable than telling the professor beforehand since it looked like I was making excuses. From that point forward, I talked briefly to each of my professors, simply telling them I had a condition that required frequent and sometimes unpredictable access to a restroom. For the most part, no one questioned me after that.

Second, demonstrate reliability by getting to class early when possible and being prepared for assignments and class discussions. Not only will this increase your professors’ respect for you, you will enjoy your classes much more as you engage intelligently with the rest of the class. In addition, give yourself extra time to complete tasks and assignments. This is good advice for anyone going back to school, not just people with a chronic condition. Stuff happens! One time when I was working on a paper at the last minute, a bees’ nest broke loose in our chimney. Bees swarmed the house, and I had to stop what I was doing, call for help, and barricade my dog and myself in another room. Although it was tempting to blame the late paper on the bees, I had to acknowledge that I wouldn’t have lost points on that paper if I hadn’t waited until the last minute to complete my assignment.

Third, make yourself comfortable. In a classroom setting, scope out the nearest restroom to your class and sit near the door to minimize distractions if you need to scoot out for a moment. Consider taking a pelvic seat cushion if your classes are long to minimize discomfort. If you are commuting, as I did, know where all the bathrooms are along your route, and give yourself extra time to get to class in case you need to stop. If you are part of a group project, try to meet with your team members at your home when possible so that you are comfortable with the environment. Other comfort measures might include wearing comfortable clothes, using stick-on heating pads over your lower abdomen, bring your own water and snacks, or taking a pyridium/AZO before you sit down in class to maximize the time you are comfortable. If needed, don’t be shy about asking for a placard or pass to park in the disability parking area of campus. Being that much closer to the restrooms when you park can really help reduce the anxiety.

Fourth, consider an alternative venue for your education. Today, there are many choices in addition to to the traditional brick and mortar campuses. I currently teach an online nutrition class for University of Phoenix to a wide variety of non-traditional students. Online courses offer a great deal of flexibility for people who travel frequently for work, parents of young children, people in the military, and people with disabilities. In most cases, you can do your work for online courses when you are available, even in the middle of the night, rather than be confined to the class schedule of a ground school. If you are comparing tuition costs of online vs. traditional schools, be sure to calculate the amount you will save on transportation, parking, and even printer ink and paper since all assignments are submitted electronically. Most of my students consider this savings a huge benefit to attending class online. Of course, two of the greatest perks are being able to attend class in your pajamas and use the bathroom any time you want to!

Finally, as I alluded to before, don’t be afraid to take it slow. Consider what your interests and talents are and start with one or two classes, especially if you are not sure what you want to major in. Use this time to explore your options and develop your personal coping skills for navigating the educational system with a chronic condition. In addition, many universities and community colleges offer certificate programs as an alternative to degree granting programs, offering credentials in subjects like health education and internet technology.

It took me a total of six years to get my Master’s degree, and I have to say going back to school was one of the best decisions I ever made. I expanded my ideas about the world, fine-tuned my writing, and more than anything, reminded my family and myself that I am an intelligent and valuable person, despite my condition. Unlike some people who seem to skip through school effortlessly, I felt that not only did I really earn my degree, but I also learned to be persistent in reaching for my goals.

Do You Tweet?

Twitter has definitely taken off in the world of social media, and the interstitial cystitis community has joined the party! Signing up for Twitter is a very quick process and can be as public or private as you like.

The great thing about Twitter is, of course, its brevity. A 'tweet' can only be 140 characters long, so if you are leaning away from longer blog posts or newsletters to get your information, Twitter may just be your key!

Here are a few more hints:

• Twitter "handles" are preceded by the @ sign. So my Twitter handle is @ICDietitian
• To make Twitter work for you, be sure to follow only those people/companies that you really want to hear from. You can find people to follow by checking the lists of other people! If you want to know of a few good IC Twitter handles, just check my follow list!
• Twitter is, in general, a very polite and reciprocal social environment. Retweeting is considered a compliment and thanking people for retweeting is common.
• Have you seen people use those number signs (#) in their tweets? Those are actually called "hashtags" and when used before keywords, they make it easier for people to follow topics. You can create "lists" to follow that will quickly show you what is being said about these topics. Some common hashtags for interstitial cystitis include:
• #interstitial_cystitis
• #interstitialcystitis
• #ICDiet
• #painfulbladder
• Twitter "chats" often use these hashtags to help people follow "real time" conversations among number of people. Look for several #ICDiet chats to come in 2012!

PS: Feel free to post your Twitter handle in the comments! (Note: all comments are moderated and nothing related to advertisements or naughty things will be published. So keep it nice!)

"Be Prepared" Is Not just for Boy Scouts

In the past few years we have seen families affected by hurricanes, earthquakes, fires, tornadoes, and winter storms. But even people who live far away from major cities and the unpredictable weather of the oceans would be wise to make preparations in their homes for unexpected events like pandemics, floods, and other disasters both natural and man made. This can be even more critical for people with chronic illnesses like interstitial cystitis or painful bladder disease.

However, before you begin filling plastic bins with random items in your basement, it is important to consider what may happen in the event of a widespread emergency. In the case of a severe flu outbreak like a pandemic, the Centers for Disease Control (CDC) warn us to expect wide-spread closures of worksites and schools along with disruption of community services, including various forms of transportation. Here are some suggestions for how to be ready:

• Experts suggest that you have two or more weeks of food and water on hand for each person (including infants) in your household. Don’t forget to include enough food and water for your pets.
• Be sure to keep a sufficient supply of any prescription medications you take regularly and supplies for any medical devices you use (like catheters and glucose monitoring equipment).
• Create a reserve of non-prescription medications like pain relievers, cough and cold medicines, fluids with electrolytes, stomach remedies and vitamins. (Remember to store medications locked away from small children and to check expiration dates regularly.)
• You will also want to store plenty of disposable, sanitary items for your family, including paper towels, tissues, toilet paper, heavy duty trash bags, soaps, cleansers, and alcohol-based sanitizer gel.
• Finally, just as important as the supplies you gather, is creating a family emergency plan that includes family medical records and an emergency contact list.
  

To learn about other ways that you can lessen the impact of a pandemic or
disaster on your family, contact your local health department or print
information from the following websites—filing it in case you cannot access the
internet in an emergency:

American Red Cross website devoted to family emergency preparedness

Ready.gov: This US Department of Homeland Security website
includes a section called “Ready Kids,” which uses stories and games to
educate children on the importance of being prepared for emergencies.

Do you have a disaster preparedness plan?

Letters to My Husband

This blog post is a little different than most. It is dedicated to my wonderful husband, without whose support I could not do what I do. His salary and hard work are what pay the bills. If you are an IC or chronic pain patient, you also know that the spouse not only goes through our disease(s) with us, they often take on more chores and caretaking than they would without s spouse who requires so much TLC. Add to that being married to a writer whose inspiration often comes in the middle of the night, and you have the makings of a saint.

Year after year when we do our taxes, I realize my income is minor compared to his despite the fact we have comparable education. We look at what I do as a ministry really, but it does take a partner who is willing and able to pick up the slack created when I spend countless hours on the phone and computer each day helping patients navigate the complexities of the interstitial cystitis diet and lifestyle.

So with Valentine's Day and our 32nd anniversary coming up, I have a big favor to ask. If YOU have been helped by my blog, facebook posts, Tweets, and books, please take the time to thank Jim!

I opened a gmail account just for this purpose: letters2Jim@gmail.com. If you don't want to email, you can also send him notes in the comment section of this blog post. I will compile everything into a PowerPoint presentation that I will give him on our anniversary!

Thanks in advance for helping me thank him!!!!

PS: If you see my husband, please don't tell him. I want this to be a secret!

Overactive Bladder or Interstitial Cystitis?

If you are like me, you cringe just remembering that "overactive bladder commercial" which showed the woman writhing in discomfort sitting in the courtroom with the jingle playing "Gotta Go, Gotta Go, Gotta Go!" From the first time I saw that OAB medication commercial, I was worried about women running to their doctor to get a pill; missing or at the very least delaying the true diagnosis of interstitial cystitis/painful bladder syndrome.

Let's face it, it is much easier to prescribe (and take) a pill rather than go through the diagnosis process for IC/PBS. I even wrote a blog post about this concept back in 2010: (See "Life Interrupted: "Gotta Go" Feeling Could Be Interstitial Cystitis.) But OAB medications DO NOT traditionally work for IC, and some people take these pills for weeks or months missing out on the true cause of their frequency, urgency, and bladder pain. And until you get the correct diagnosis you are likely to miss out on some of the best treatments we have ever had for IC/PBS.

Then, I came across this incredible personal story from Health.com. In her story, My Overactive Bladder Was Due to Interstitial Cystitis, Diane Lang, whose original diagnosis was OAB, eventually discovered she had IC. Diane’s story reminds us that if you have been diagnosed with overactive bladder and the medications have not helped, you may need further evaluation to determine if you have IC.

Eventually, Diane changed her diet and incorporated other lifestyle changes like meditation, pelvic floor exercises, and simple problem solving to help control her symptoms. The best part of Diane’s story, however, is how she learned to deal with the anxiety and uncertainty of her disease. I highly encourage you to read more of Diane's story at Health.com.

Listen to your body! If you have been diagnosed with overactive bladder, but your symptoms are not under control, ask your physician if you might have interstitial cystitis/painful bladder syndrome. You can also find some information from these websites:

Interstitial Cystitis Association

Interstitial Cystitis Network (also the Interstitial Cystitis Network Support Forums)

And my website: Confident Choices for Interstitial Cystitis Patients

For more information on the IC Diet, see The IC Food List

If you are not happy with what your doctor is telling you, either persist with that doctor or move on until someone can give you answers. Copy information from Diane's article or from these websites and take it with you. It is your body. You deserve to have answers.

Dancing Like a Star!

From the beginning, I have been a fan of Dancing with the Stars where celebrities team up with professional ballroom dancers and compete for a mirrored, disco ball trophy. Along with millions of other faithful viewers, my husband and I follow the intense competition week after week as actors, musicians, and even retired professional football players demonstrate that with hard work and determination a person can transform from an awkward beginner into a graceful, skilled dancer. From the beginning, Dancing with the Stars conveyed the message that anyone can dance.

The show also demonstrates that dancing can be good fitness as well as good fun. Celebrity participants get visibly leaner and stronger as each week passes. Many even boast about their remarkable weight loss. Inspired by the show, viewers from Boston to LA are getting up from their sofas and starting to move to the music.

The fitness industry didn’t miss a beat in capitalizing on the popularity of the show. Dance classes of various forms are now big business at spas and gyms all over the country, and dance instruction and exercise videos are some of the hottest selling items on Amazon.com (including a branded Dancing with the Stars Latin Dance workout based on the show).

“While I dance I cannot judge, I cannot hate, I cannot separate myself from life. I can only be joyful and whole. That is why I dance.” Hans Bos

Of course, the best thing about dancing is that you don’t need professional instruction, a video, or any special equipment to do it! All you have to do is turn on some music that you like and get up and move! Trust your body and the music to tell you what to do. Bored with the treadmill? Get up and dance! Looking for an exercise that allows you to express your creativity? Get up and dance! Need an emotional or spiritual pick-up? Get up and dance! Afraid others will notice that you have two left feet? No problem; just lock yourself in your bedroom, pull the shades, and dance in the privacy of your home! You can even do your regular cardio and strength training workouts in time to the music.

Naturally, if it has been awhile since you have danced or engaged in strenuous activity, start slowly. Shimmy and shake your body for a few minutes at a time, maybe while you do the dishes or brush your teeth. Embrace your partner and slow dance to the radio or dance to silly songs like the Hokey Pokey. You can even get a great upper body workout by listening to classical or big band music and pretending to conduct the orchestra. The most important thing to remember is to keep moving and do something you enjoy.

For more information on IC and exercise see: Customizing the Interstitial Cystitis Diet: A Confident Choices Book

Take Action to Defeat Depression!

(Note, if you are currently in crisis, call the Suicide Prevention Line at 1-800-273-TALK. You and your life ARE worth it!)

All of us have our ups and downs, and people with a chronic illness like interstitial cystitis can have more than their share. However, if you have been feeling down more than upbeat lately, you may consider being evaluated for depression. If you learn that you have depression, you will want to follow through with your doctor’s treatment recommendations, which may include medication and therapy. Not surprisingly, you will play a major role in how fast you feel better. There are many things you can do to take care of yourself, whether you are receiving treatment or you have early signs of depression and want to prevent it.

• Foster friendships and a social support network. Positive friends and family members can be a source of joy and support in anyone’s life but especially if you are struggling with self-doubt.
• Join a self-help group. In person or online, groups such as these where people are facing similar problems can provide a safe place for sharing. Exercise regularly. Aerobic exercise like walking or biking is particularly helpful for improving mood. Yoga and tai chi can help reduce stress.
• Reactivate your life. What enjoyable activity have you dropped because you didn’t feel up to it? Don’t wait. Pick it up again now!
• Write it down. Some people find that writing in a journal is a good outlet for negative emotions like anger, fear, and frustration.

Symptoms of Depression

Consult your physician if you have any of these symptoms lasting two or more weeks:

• Feelings of sadness or emptiness
• Loss of interest in most activities
• Appetite or weight changes
• Feelings of mental/physical slowness or agitation
• Feelings of worthlessness, helplessness, or guilt
• Feeling tired and/or difficulty concentrating
• Sleep disturbances (sleeping less or more than usual)
• Thoughts of death or suicide (Note, if you are currently in crisis, call the Suicide Prevention Line at 1-800-273-TALK. You and your life ARE worth it!

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