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.

 

SoCS: three dates

My mother – known as Nana here at Top of JC’s Mind – needs a diagnostic heart catheterization as follow-up to this fainting episode and likely prelude to heart valve replacement surgery.

The date of the heart cath was supposed to be June 28.

The week before, she had to have blood work done and the cardiologist didn’t like some of the numbers, so he cancelled it.

After weeks of doctor visits and tests, she was cleared to proceed.

The next date was August 17.

Unfortunately, the day she had to have the pre-procedure blood draw, she developed shortness of breath and wound up in the hospital overnight with a new diagnosis of congestive heart failure. She was discharged from the hospital and sent home to rest, waiting for the planned procedure on the 17th.

Except that the doctor’s office, looking at the pre-hospital rather than post-hospital blood work, cancelled it again.

I was very, very, very, very, very upset. After consulting with her primary care, the cardiologist promised to fit her in next week.

And then proceeded to give us the date of August 31st.

Which is not next week.

I’m still pretty upset, especially because the delay is what I feel got her into the diagnostic category of heart failure.

But, deep breath, and all that…

Fortunately, she is doing quite well now, although she has to take it very easy.

We are waiting for August 31st.

Third time’s the charm.

At least it better be.
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Linda’s prompt for Stream of Consciousness Saturday this week is “date.” Join us! Find out how here:  https://lindaghill.com/2016/08/19/the-friday-reminder-and-prompt-for-socs-aug-2016/

socsbadge2016-17

 

April 8

I am going to preface this post with the statement that Nana is doing well, so as not to cause anyone undue stress.

On Friday, April 8th, my plan was to do a couple of things at Grandma’s cottage, which we were working on cleaning out, have lunch with a friend, and then head to Syracuse to bring daughter T home for the weekend, which would be her first time home since Grandma died on March 22nd.

A few minutes after I arrived at the senior community, my cell phone rang. It was my mom (Nana) calling from the emergency room. She had collapsed in the waiting room of a medical building across the street from the hospital. The rapid response team had done a couple of rounds of CPR on her and she was in the emergency room for monitoring and tests.

I used the speakerphone to tell B what was happening. He made arrangements to go to Syracuse to get T. I left messages for my friend not to expect me for lunch. Meanwhile, I drove to the hospital.

I was lucky to find a parking space in the visitors’ lot and rushed up the hill toward the emergency entrance, a cold wind blowing directly into my face, making it difficult to catch my breath. After an unusually mild winter, we had a couple of cold snowy weeks once spring had officially arrived.

Once I was able to get through the line and behind the locked doors of the ER, the wait was on. An EKG was done. The heart monitor was tracing green lines across a screen above Nana’s head. Blood was drawn for tests. They took Nana down for a chest X-ray. There was a line started in her arm, although she wasn’t hooked up to any intravenous fluids. She wasn’t allowed to eat or drink. We were talking to pass the time. The ER became increasingly busy and noisy.

Nana was having some pain in her back and chest. The nurse told us it was from the CPR. A small price to pay from having been brought back from death…

Several hours later, the physician assigned to her case came in. Nana was not dehydrated. Her electrolytes were fine. She hadn’t had a heart attack.

In fact, her heart had not stopped at all.

She had fainted, mostly likely from a combination of cold, wind, walking too quickly uphill in the morning when her medications tend to drop her blood pressure.

We were grateful that she was okay, although I admit that I have been struggling with the fact that a highly trained medical team missed her pulse and performed CPR when they should have been reaching for the smelling salts.

This was especially difficult as she has had to deal with a bruised chest and ribs over these following weeks. It was all unnecessary.

For me, it was also an extra measure of fear that pushed me within a hair’s breadth of melting down. I have been working hard at keeping myself functional during this stressful time. For a few hours, I felt as though I might not be able to cope with an added crisis.

Thank God that Nana and the rest of the family were spared what could have been so much worse.