IC Awareness Month

September is IC Awareness Month, so, as someone living with IC, I am doing my part to spread awareness.

IC stands for interstitial cystitis, which is also known as bladder pain syndrome or hypersensitive bladder syndrome. Symptoms, for most, include pelvic pain or pressure and increased urinary frequency/urgency. It affects millions of people in the US and millions more around the world, although estimates of prevalence differ. Part of the reason that statistics are hard to come by is that many people see multiple doctors for years before they are correctly diagnosed. This delay is further exacerbated by the fact that IC is more common among women. As with other ailments among women, some patients have been told their symptoms are “all in the their heads.”  Others have been misdiagnosed with reproductive system problems. Among men with IC, the misdiagnosis is usually chronic prostatitis.

Another problem with getting a correct diagnosis is that there is no definitive test for IC. One subtype of IC, accounting for about 10% of cases, causes lesions in the bladder, which can be seen during cystoscopy, but the other types do not have that straightforward a presentation. Diagnosis is also complicated by the fact that no one knows what causes IC. It behaves somewhat like an autoimmune disorder and also seems to be related to the nervous system. Research is ongoing. Many patients with IC also have periods where the symptoms flare up and other times when they are lessened or absent. This can also be a factor if you have a long wait to see a specialist; your symptoms may have disappeared by the time of your appointment.

I have one of the subtypes of IC in which its symptoms occur in conjunction with other pain syndromes, such as irritable bowel syndrome, endometriosis, and vulvodynia. This can complicate treatment because there are so many different factors involved. Some people with IC, like me, have success with medications. Once symptoms have calmed down, the medication regimen may be ended and other methods, such as dietary changes and stress reduction, may be able to avert flares or, at least, keep them manageable.

One of the things that I need to avoid is acidic foods. I do have a dietary supplement that helps with eating acidic foods, including fruits, although I still avoid citrus. When I make tomato sauce, I put in a bit of baking soda to counteract the acidity. Bonus: it’s fun to watch the sauce foam and bubble! It can be difficult to find things to drink beyond water and milk. I never was a coffee and tea drinker, so I didn’t have to worry about giving those up. I can’t have anything carbonated, so no sodas or sparkling water. (Some people with IC can drink certain varieties of coffee, tea, and soda; sometimes, trial and error is needed to figure out what works for an individual.) My new splurge drink is Hint, fruit-flavored water without added sweeteners or calories. It’s fun to have another option.

The most difficult thing for me to avoid is chocolate. I can have white chocolate, although I need to shop carefully as some of it is just bad. It is the cocoa component that is the culprit with IC, causing a histamine reaction in the bladder. I admit that I miss milk and dark chocolate, and, especially, hot cocoa, which I used to make with cinnamon and ginger. Every once in a while, I will eat a bit of chocolate. I’ve found if I eat just a little, I can manage the flare that will follow, but usually I am good and avoid it completely.

If you think you may have IC, bring it up with your doctor. My doctor recommended that I see a urogynecologist, who was able to diagnose and treat me properly. There are treatment options out there, which differ depending on the subtype of IC you have. Some types are able to be cured with the right therapy, while most others can learn to treat and manage their symptoms.

Don’t let anyone tell you that your symptoms are all in your head! Don’t try to self-treat because of embarrassment or other factors. You can find more info about IC from the Interstitial Cystitis Network, which is one of the sponsors of IC Awareness Month, or from reputable medical websites.  The stress of feeling alone with your illness can make it even worse, so reach out.

One final thought:  Please keep in mind that IC and many other illnesses are invisible. This does not mean that they aren’t causing pain or other symptoms. Just because someone “looks fine,” doesn’t mean they are fine. If someone you know has or may have an invisible illness, treat them with kindness and understanding. Help them find the medical help they need. Support them as they deal with their illness. It will make a difference in their lives.

 

This month a year ago…

Warning:  I haven’t been sleeping well, so rambling is upcoming.

I’ve done some posts about this being the tenth anniversary of some huge losses in my life, but today I am reflecting on a year ago.

Last September, I sang with the Smith College Alumnae Chorus for a choral homecoming weekend with Alice Parker.  One of the posts I made afterward was about visiting the memorial tree for our friend Beth who died during our senior year and the chapel where I had spent so many hours.  I had always intended to write another post about friendship and Smith women, but didn’t for reasons that will probably become clear later on in the post. I’m hoping to give a taste of that topic now…

I love to spend time with Smith women, especially back in Northampton. It is always special to me to see my roommate Mary with whom I share such a deep connection that we pick up conversation as though we weren’t a couple thousand miles apart the vast majority of the time.

I was blessed to renew ties with two women, each named Cathy, whom I had known during my Smith years, although they were in different class years so I didn’t know them as well.  It may not come as a surprise that our best times for sharing revolved around food. Cathy R. invited us to a lovely farm-fresh al fresco lunch with her family who had travelled with her and we talked about farming and New England and family and medicine and art and photography and how some of us would have been at the Climate March in NYC that day if we hadn’t already committed to being at Smith for the weekend.

Cathy K. lives in the next town over from Northampton and invited us to her home after the concert for appetizers before going out to dinner.  Her family owns a couple of local stores that sell specialty foods, wine, prepared foods, and more. Everything was so plentiful and delicious that we never did go on to dinner but spent hours eating, talking, laughing, and sharing. Family, education, politics, losses, music, career changes, hopes, the future, new directions.  It is so seldom that one has an opportunity to discuss with such depth and breadth. I am profoundly grateful that being with Smith women so often leads to these heart-mind-and-soul-enriching conversations.

I was also grateful to have re-connected with Anne, who is a wonderful poet and who graciously accepted a copy of the chapbook I had assembled the prior year for a local contest, even though neither the individual poems nor my editing abilities were advanced enough to warrant doing so.  She sent me valuable feedback and advice and has since looked over other poems for me. She is one of my poetry godmothers!

Now, a year later, the Alumnae Chorus is coming up on a deadline to sign up to tour in Cuba next July.  And I can’t do it. Within this next year, both E and T plan to finish their master’s degrees and our travel time and resources need to go to supporting them. I also must admit that the thought of touring Cuba doesn’t really appeal to me, especially in the heat of late July.  I am such a delicate flower that I would probably wilt!

And yesterday was Grandma’s (my mother-in-law) birthday. She has a problem with admitting her age so I won’t reveal it here, but this year was especially difficult for her because last year at this time we were in the throes of trying to determine what was wrong with her back. It turned out that an osteoporotic compression fracture in a vertebra led to its collapse and a long year of pain and complications and medications and therapy and ups and downs. Well, a lot more downs than ups.

Her elder son and his daughter came to visit for the weekend, which was nice, but it also was a reminder of how much she can’t do anymore.  Grandma was trying to wish away the last year, which is painful to watch.

It’s also a reminder of how stressful the last year has been. Exhibit A:  my outbreak of shingles last December. Lucky for you, I’m not going on to the rest of the exhibits. I am doing better with giving myself a bit more distance, but it is still sad and concerning and draining.

Especially in September.

I’m working on getting myself back into a better place. I actually managed to sleep a five hour stretch last night.

I’ll take all the progress I can get.

disaster preparedness and the radio

Four years ago, my hometown was among those affected by record flooding caused by the remnants of tropical storm Lee adding ten inches of rain to ground already saturated by Irene a few days prior. We were grateful that no one in our area was killed by the flood, largely due to the fact that people followed evacuation orders. However, there was a lot of damage with some homes and businesses lost permanently.

Since then, emergency preparedness has gotten more attention from government and the media, especially in September which is designated as disaster preparedness month.

One of the most important things to maintain during a crisis is effective communication. This is an area, though, where sometimes lower tech is more vital than high-tech.

Although our home did not flood, we were without electrical service for four days, which also meant no telephone or internet service. We would listen to the radio for information and it was very frustrating to get only very limited information on-air with the directive to go to their website for complete information.  Those of us who most needed that information did not have internet available. I can hear some people saying that we should just use our cell phones, but a)  the majority of people in our area don’t have cell phones with internet access, b)  with no electricity, it’s difficult to keep cell phones charged, and c)  during emergencies, cell networks often fail due to increased traffic.

Battery-operated, hand-cranked, or car radios are a better tool than the internet for reaching people who are affected by floods, ice storms, and other emergencies that result in loss of electrical service. Disaster preparedness plans should reflect this.