Author: Joanne Corey

Please come visit my eclectic blog, Top of JC's Mind. You can never be sure what you'll find!

IC September

I am not only an eclectic blogger, but also an eclectic follower and reader of blogs. While I follow other eclectic blogs, I also follow blogs focused on travel, food, photography, poetry, the environment, and many other topics.

I follow several blogs where people write of dealing with illness, particularly invisible illnesses, such as fibromyalgia. I do sometimes write here about being the parent of a child with fibromyalgia, but what I haven’t written about is dealing with invisible illnesses of my own. Today, in observance of Invisible Illness Awareness Week  and the close of IC Awareness Month, I have decided to write about interstitial cystitis, which has been part of my life for many years.

Part of the reason I don’t tend to write about having some hidden medical conditions is that I feel fortunate that I do not have the more severe symptoms that some others endure, although, if I am honest, I have to admit that my symptoms, especially when I am having a bad flare, do interfere with what I am able to do and where I am able to go. Again, I am lucky that my personal schedule is usually fairly flexible, so that I can arrange to stay home if I am uncomfortable or tired from being kept awake by symptoms. I am acutely aware that others have it so much worse and I am writing this not as a complaint but in an effort to share some information about a condition which, although relatively common, many people are unaware.

What is interstitial cystitis (IC)? 
Interstitial cystitis, also called bladder pain syndrome, is a condition that can cause recurring bladder and pelvic pressure or pain and increased urinary frequency and urgency.  The bladder lining often bleeds and, in more severe forms, develops a kind of ulceration called Hunner’s lesions. It is more common in adult women but can and does affect children and men, too. The symptoms often vary over time, with more severe flares cropping up from the baseline level.

What causes IC?
Researchers don’t know for sure. They think that some trigger event damages the lining of the bladder, with particles in the urine then further damaging the lining and causing chronic nerve pain. It is believed that the bladder lining is unable to repair itself because IC patients produce a protein that prevents the repair.

How is it treated?
Because the cause is undetermined, treatment centers on trying to alleviate symptoms and prevent flares. One of the most important things people with IC need to do is control acids in their diet. (For me, drinking soda or undiluted fruit juice is the equivalent of pouring lemon juice on a cut.) There are a few oral medications that help some people. Physical therapy can be prescribed. When the condition is more severe, there are medications that are delivered directly into the bladder, surgical treatment for Hunner’s lesions, and use of electrical nerve stimulators.

And for more fun and games…
IC often appears alongside other conditions, many of which are also poorly understood as to causation. People with IC often have allergies, irritable bowel syndrome, and sensitive skin. (Check, check, and check for me.) Other conditions that may occur alongside IC are vulvodynia, fibromyalgia/chronic fatigue syndrome, and lupus. I’ve actually taken part in research looking into genetic predisposition in IC patients, which is interesting as I have family history with some of the related conditions besides my own diagnosis.

For anyone who would like to learn more about IC, I recommend this site:  http://www.ichelp.org which is full of helpful information and links to more resources.

Please remember…
There are many, many people who deal with hidden medical conditions. Many of these cause chronic pain. And many of these people do not look “sick.” Please, have compassion. Be understanding. Don’t blame them if they have to change plans at the last minute or aren’t able to go out of the house because they are having a bad day – or an exhausted day because they had a bad night before. Remember that you are lucky to be having a good day and realize that a day may come when you need the same kind of support and caring that your friend or family member needs now.

– JC

Shell No!

Today, we received the happy news that Shell Oil is pulling out of drilling for oil under the Chukchi Sea in the Arctic Ocean off the coast of Alaska.

Too bad that they didn’t spend the $7 billion they just wasted on Arctic drilling on diversifying into renewable energy options such as wind, solar, or tidal.

The fossil fuel companies remind me of the last whaling ships, desperately clinging to producing an energy sources whose heyday is rightfully over.

They need to adapt and re-make their companies to meet the clean energy needs of the present and future or they will become fossils themselves.

On being a US Catholic in the days of Pope Francis

While the United States is a very pluralistic country, with its people following hundreds of different spiritual, religious, philosophical, or secular belief systems, seventy million of us consider ourselves to be Roman Catholic.

With Pope Francis travelling in the Northeastern United States these past few days, there has been extensive media coverage, with reporters and interviewees acknowledging that they are Catholic, which is often not brought up in journalism or entertainment here. It has been touching to hear US Catholics talk about their faith and to hear Francis reach out to all people, regardless of their belief in the Divine or not, in keeping with the meaning of the word “catholic” which is “universal.” It is heartening to hear so many respond in kind, saying, “I’m not Catholic but I want to see Francis and hear what he has to say.”

I am Catholic, but do not in any way promote my faith as being any better than another path. It is simply the path that has meaning to me and which is integrated into my being and through which I hope to live out Divine Love in the world. I believe that the vast majority of people are of good will and decry those few who misuse ideology to do violence to or oppress others. Sadly, there have been many instances in which the power structure of the Catholic church has sinned and been guilty of horrible crimes against entire ethnic groups or religions as well as individual persons. These are human failings and not a reflection of God who is good and always loving.

This visit from Pope Francis is a good opportunity to talk about the public perception of the Catholic church and the lived experience of being a US Catholic. People, even many Catholics themselves, think of the Catholic Church as being a set of beliefs and rules that must be adhered to uniformly to belong; much of the Catholic hierarchy has advanced that view in my lifetime, but it is not really what the church teaches. There are a core set of teachings called dogmas which must be accepted in order to be Catholic. These are God-related and articulated in important teachings such as the creed.

There are many other teachings, usually more centered on human activity. The most important of these are doctrines. Catholics are asked to believe these teachings, as well as other teachings at lesser levels of authority, but dissent is possible after considered study and reflection.

The Catholic Church believes in the primacy of conscience, which means that we are called to act in accord to our individual, well-formed conscience. We sin if we violate our conscience and damage our relationship with God and other people. Dissenting from a teaching or breaking a rule is not wrong if we are following our conscience, having seriously considered church teaching on the topic.

Probably the most common experience of this in the United States is dissent from Paul VI’s encyclical Humanae Vitae, which prohibited the use of artificial means of birth control while allowing natural ones. Even though a commission that studied the issue recommended that the church allow contraception, Paul VI was persuaded to continue prohibiting it. Since it was first promulgated in 1968, this teaching has not been accepted by the vast majority of US Catholics, who have the right and responsibility to follow their own consciences on this matter – and on the related issue of using fertility assistance, several means of which, such as artificial insemination and in-vitro fertilization, are also against official Catholic teaching.

Another common misunderstanding is that divorced Catholics can’t receive communion. This isn’t true. The problem comes in when a Catholic who has a civil divorce remarries without an annulment from the church. (More misunderstandings arise over annulments. A Catholic annulment does not mean that there was no marriage; it means that there was a serious impediment to the marriage from the start so that it was not a sacramental marriage. If an annulment is granted, the individuals are then free to enter into a sacramental marriage with another spouse, but the first marriage is still recognized as a civil marriage. Some people are afraid to pursue an annulment because they think their children will then be considered born out of wedlock, but that is not the case.) The reason behind the prohibition against receiving communion in a second marriage without an annulment is that it is considered a public scandal to be living in adultery. So, yes, this is about sex. Someone who is living in a second marriage without an annulment but who is living what the church calls “a chaste life” can receive communion.

Yeah, the officialdom of the Catholic church doesn’t understand sexual behavior very well at all. Unfortunately, this has become an overwhelming focus and attempted means of control by the hierarchy in the United States and elsewhere. It is hopeful that Francis has changed the emphasis to larger human problems, like poverty, environmental degradation, war, violence, and failure to work for justice and the common good.

Francis has already endorsed some procedures to make annulments less cumbersome to obtain and there is hope for further reform. There is also the upcoming Jubilee Year of Mercy, which will offer some other opportunities within the church. The larger impact, though, is Francis’s example of outreach, caring, and concern for all people and for creation. He will empower people toward justice, love, and peace, whether or not all the other bishops follow his lead.

We are taught that the church is the people of God. Some in the hierarchy have acted as though they themselves are the core of the church, more important than the millions upon millions of the laity.

With Francis, we may finally have the opportunity to be truly catholic, that is universal.

Richard Rohr on myth, art, and poetry

I love this meditation so much, I had to share it. A must-read for anyone who is interested in art, poetry, words, myth, and being!
– JC

Source: http://myemail.constantcontact.com/Richard-Rohr-s-Meditation–Mythos-and-Logos.html?soid=1103098668616&aid=uaYHY87XmII

SoCS: really now, peat?

Linda’s prompt for Stream of Consciousness Saturday this week is “-eat.” She says, “Use the word ‘eat’ or add letters to it to make a different word.”  So, in true stream of consciousness fashion, I am starting off with the word “peat.”

Which probably seems like an odd word for my brain to settle upon, but I was listening to the radio the other day and they were talking about peat and permafrost and how they are such massive carbon sinks for the world and how, if the permafrost melts and all that carbon gets released into the atmosphere, the planet will heat so much that, well, it will be really bad for humanity.

Maybe I shouldn’t be surprised that this was where my mind went. After all, writing/thinking/reading/discussing carbon emissions and climate change has been part of my daily life (or almost daily life) for several years now.

It started with joining the fight to keep high-volume hydraulic fracturing of shale formations out of New York State and inevitably led to educating about the broader problems with carbon emissions and global warming and increases in severe weather, droughts, fires, etc., sea level rise, melting land and sea ice, and the increasingly urgent need to end reliance on fossil fuels and convert to renewable energy sources, especially those that are no/low carbon emitting.

I could – and have – gone on and on about this, but I will spare you today!

I will, though, send my thanks out to Pope Francis, currently 200+ miles to my south in Philadelphia, PA, for spreading the message around the world about the urgency of fighting climate change and the effects it has on the planet and the human community, particularly the most vulnerable people. His solution is to develop an “integral ecology” that serves to both protect the environment and ensure the dignity and needs of all people are met.

We are all in this together. Let’s clasp hands and forge ahead with the work needed to save the planet and ourselves.
*****
This post is part of Linda’s Stream of Consciousness Saturdays.  Join us! Find out how here:   http://lindaghill.com/2015/09/25/the-friday-reminder-and-prompt-for-socs-sept-2615/

SoCS badge 2015

Francis at Ground Zero

I wanted to watch Pope Francis’s address to the United Nations General Assembly this morning, but, due to the sudden news of House Speaker John Boehner’s impending resignation, part of the coverage of the speech was pre-empted. The part of the speech that I was able to hear was totally in keeping with what Francis has been saying around the world about overcoming poverty, upholding the common good, about integral ecology, justice, and peace.

After leaving the United Nations, Francis traveled to the World Trade Center 9/11 memorial. After visiting the outdoor memorial and meeting with family members of those who lost their lives that day, there was a stunning multi-religious prayer service in the underground museum of the memorial.

Francis joined an arc of New York City religious leaders, reflecting in their persons and their traditional religious dress the huge diversity of the city and of the United States as a whole. There were prayers and chants on the theme of peace from the Hindu, Muslim, Sikh, Buddhist, and Christian traditions in several languages, often with translations offered. After a stunning prayer for the dead sung in Hebrew, the Pope spoke in Spanish, ending with a plea for peace and a moment of silence for each to offer their own prayers or thoughts in accord with their own beliefs.

This was followed by the Young People’s Chorus of New York City singing “Let There Be Peace on Earth.” The sound of their young voices, coupled with the visual impact of their diversity, brought tears to my eyes, especially when the camera zoomed in on two of the singers holding hands.

It all made me believe that peace is possible.

Peace is essential.

Francis at Congress

This morning, I listened to Pope Francis’s address to the joint meeting of Congress with a group of other Catholics.

It was a bit strange to see the formality of the proceedings which looked very much like the annual State of the Union speech given by the President. Besides the Representatives and Senators, there were most of the Cabinet Secretaries and only four members of the Supreme Court, which was disappointing, given that three of the six Catholic justices chose not to attend.

A few things that stood out for me from Francis’s address:

  • He very carefully made the speech as relatable to people in the United States as he could. 
    Even though it was a long speech, he spoke in English, a language which he knows but in which he is not fluent. It was obvious that he understood well US history, values, and sensibilities, and the speech was organized around the ideals and example of four Americans, President Abraham Lincoln, the Reverend Martin Luther King, Jr., Dorothy Day, and Thomas Merton. While the first two would be familiar to everyone, the later two may not be, each being a 20th century convert to Catholicism. Day is known for her work among the marginalized and for her dedication to social justice and human dignity. Merton is known for his capacity to enter into dialogue and integrate seemingly contradictory viewpoints.
  • Francis very strongly advocated for ending the death penalty worldwide. The United States is one of the few countries left in the world that exacts killing of those convicted of crimes.  While there are many people who oppose it in the United States, executions are still taking place. Some states have abolished it, but others have not. Pope Francis described it as an affront to the dignity of the person and said that the goal of prison was to foster hope and rehabilitation. The US bishops are currently renewing their efforts toward abolition of the death penalty across the country. As an opponent of the death penalty since childhood, I was grateful to hear such a strong message against it.
  • Francis was especially bold in addressing the issue of arms sales.  When Francis was speaking about Thomas Merton, he spoke about bridging divides and how good political leaders seize opportunities for dialogue and peace with openness and optimism. He called for an end to armed conflict and then went on to say that profit gained from selling weapons to those who will use them against people is “blood money.” Given how many of the arms in the world originate in the United States, this was a challenging thing to say. I do agree with Francis on this, but the Congress was pretty quiet in reaction.
  • Francis most frequently mentioned the common good as a value that is both spiritual/religious and civic.  Francis touched on many themes, including immigrants, the treatment of the First Nations, freedom of thought and expression, combatting fundamentalism and polarization of all kinds, human dignity and justice, the Golden Rule, care of creation, family life, and giving hope to the younger generations. He mentioned over and over how government, businesspeople, and the society as a whole must co-operate to bring about justice and promote the common good.

I say, “Amen!”

One-Liner Wednesday: Muir quote

“Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and cheer and give strength to body and soul alike.”
– John Muir

Join us for Linda’s One-Liner Wednesdays. Find out how here:  http://lindaghill.com/2015/09/23/one-liner-wednesday-author-author/

Scott Walker leads?

“People are called to be leaders in unusual ways,” Walker said. “Today, I believe that I am being called to lead by helping to clear the field in this race so that a positive, conservative message can rise to the top of the field.”

Wisconsin Governor Scott Walker said this yesterday in his speech suspending his campaign for the Republican party’s nomination for the presidency.

It is one of the most unusual leadership calls I have ever seen.

Leading by quitting? And inviting others to follow you in quitting, too?

In one way, I am relieved that he has abandoned his presidential bid because I think his policies would have been a disaster for the country,  but there are a number of other candidates in the field who are even more destructive and they are not about to “follow his lead” in leaving.

I guess the bright side is that the next debate may be able to fit all the candidates on stage at once, instead of having a small sideshow debate before the main event.

Seriously. I’m trying to find something positive to say about the mess that is the Republican nominating process.

It’s a difficult assignment.

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.