Category: medical care

Remembrances on Sunday

Today would have been my friend Angie‘s 65th birthday and I just sent a contribution to her memorial fund. In the brief note that I sent to her family, I noted that I can’t imagine that Angie would have “retired” because she was all about love and service and would not have stopped doing that. I am honoring her memory today and remembering her family and friends who have been without her physical presence for over ten years.

As it happens, two of my college friends lost their mothers this month, one unexpectedly and one after a long period of illness, so I am sending thoughts and prayers out to Sally and Tricia, their moms, and their families.

Two friends are dealing with a sudden medical emergency with their loved ones. One’s husband’s life was saved by emergency open heart surgery. The other’s asymptomatic brother was diagnosed with stage four colon cancer at his first screening colonoscopy at age 50. Both men are facing a long road to recovery and I am holding them and their whole families in thought and prayer as well.

Yesterday, I attended vigil mass at St. Joseph’s, which was the long-time church home of my friend Marcia, whom we lost to ovarian cancer several years ago.  Last month was ovarian cancer awareness month, with several big fundraising events. There has been some progress in detection and treatment since Marcia died and I hope that the advances will help her descendants to lead long, healthy lives.

It’s a quiet Sunday morning. Soon, B and I will head up to Good Shepherd Village to visit Grandma, Nana, and Paco with an extra measure of thankfulness.

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

Candles of Hope

People who often visit Top of JC’s Mind know that I tend to write excited, squealing posts any time a poem gets accepted and again when it is actually published.

This past spring, however, I did not post when the Candles of Hope anthology, to which I am a contributor, became available in print.

It’s complicated.

The subtitle of the anthology is “A Collection of Cancer Poetry” and it was edited by Wendy Lawrence of GWL Publishing to raise funds for Topic of Cancer, a UK charity.

The poem I submitted can be found here.  I had written it late one night and posted it without giving any thought that it might one day be published in print. Wendy had put out a call for poems about cancer for the anthology several months later and my poem was accepted. Last October, when I was writing the note that accompanies the poem in the anthology, I was happy to report that K was in remission.

This spring, as the book was released, we found out that K was having a recurrence.

I couldn’t bring myself to publicly celebrate a publication, knowing that K was facing difficult treatment decisions, especially as the chemo that achieved the remission last year very nearly killed her.

I decided to share the news and the link today because K, while still under treatment, seems to be doing quite well. She is able to be out and about and able to attend some events at church.

I would like to ask everyone who reads this to send prayers, healing thoughts, good energy, or whatever fits with your own belief system for K.

With thanks,
JC

SoCS: vision

Last week, I had my annual vision exam. I have worn glasses since I was seven. I was near-sighted as a child, but now I have far-sightedness, too, related to age.

And my in-between vision is not great either, so I have been wearing progressives, which try to help you see well across all distances.

Last year, I finally gave up and got a special pair of glasses called an office lens. This pair of glasses is not good for long distances, like driving, but they are really good for short and intermediate distance, so I can read with them and, most importantly, use them when I am at my desktop computer without having to tilt my head at a weird angle and make my neck get a crick. However, they still let me see clearly about ten feet away, so I can use them for walking around the house without having to switch glasses every time I get up from the computer. I really love these glasses and I find my eyes are much less tired at the end of the day because of them.

I am thinking of replacing my progressives that I wear most of the time with bifocals so that I will still be able to drive and read and do kitchen work and such. Using my desktop is my main intermediate vision task, so I will switch to my office lens for that, but have the bifocal for general wear and being out and about.

And, someday in the future, I will need to have cataract surgery and will probably see better with the new implantable lenses than I have seen when I was six.
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Linda’s prompt for Stream of Consciousness Saturday this week is: “vis.”  the post should “use a word, or tie your post’s theme around a word, that contains the letters VIS, in that order.” Join us!  Details here:  http://lindaghill.com/2015/07/24/the-friday-reminder-and-prompt-for-socs-july-2515/

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The US Supreme Court

Question; Which will better stand the test of time – Justice Kagan’s references to Spiderman in the majority patent case decision or Justice Scalia’s use of the word “jiggery-pokery” in the dissent from the health care subsidy case?

Please weigh in the comments!

(Bonus question:  Can you tell how punchy I am right now?)

Reblog: fighting childhood cancer

Mytwosentences 109.

From one of my favorite blogs. Edward can say a lot with two sentences and a photo.

visiting palliative care

First, to set everyone’s mind at ease, no one in my life has a terminal diagnosis. Sadly, it seems that most people when they hear the words “palliative care” think that it is the equivalent of hospice care, but it is not. Hospice uses palliative care services with those who are experiencing their final months of life, but palliative care is available to anyone of any age and diagnosis.

Palliative care is a team-based, multidisciplinary approach to managing pain. Frustrated by the poor pain control following the compression fracture and subsequent vertebral collapse that Grandma had last fall, and the loss of appetite, weight loss, and increase in a-fib that followed, we managed to get a referral to the palliative care practice in March.

We are blessed to be working with the amazing Sister Hermie. I know in some places all nurses are called Sister, but Sister Hermie actually is a Catholic sister. I’m not sure what order.  She is originally from Africa, but is working as a nurse-practitioner specializing in palliative care here in the US. She is open and engaging, with a lovely smile and ready laugh. She manages to get the medical information she needs by asking questions within the context of storytelling. Even Grandma, who is endowed with a natural New England reserve, is charmed by Sister Hermie!

We are so grateful for Sister Hermie’s care and expertise. She immediately added a medication to treat nerve pain and the improvement was noticeable in the first 24 hours. Grandma has been able to go down to the dining center with her friends on a regular basis, to go on short shopping trips, and to eat better and gain weight.  The pain relief has afforded the opportunity to move forward with physical therapy, which makes her stronger and more functional, although she has also had to accept that she will never be able to do some of the things she used to do prior to the break. She has started to add massage to the treatment mix, which will be especially helpful when the physical therapy treatments end.

While the pain is better controlled, it is not eliminated. There has to be a balance between pain relief and the ability to function. It’s not helpful for her to be pain-free but too drowsy to do anything. Still, she is so much better the last two months than she was in the six months prior that it feels like we have Grandma restored to us.

Thank you, Sister Hermie!

Unfortunately, palliative care is not being fully utilized. Even many of the medical professionals in our community don’t know that it exists, so they don’t request referrals. We had to research it ourselves and then ask the primary care provider for the referral, but it has been worth it. I encourage anyone with a loved one who is dealing with chronic pain, whatever the cause and whatever their age, to look for a palliative care specialist, if their current pain control regimen is not sufficient.

Friday night fun? – part 2

In part one of this post, I wrote about reading at poetry open mic for the first time.  Here is a (somewhat condensed) continuation of the story.

While stopped at a traffic light on the way home, I turned the ringer of my phone back on and was surprised to see that there was a missed call from my husband B, who had stayed at home because he wasn’t feeling well.  He knew where I was and that I wouldn’t have the phone on during the reading, so I immediately became apprehensive and rushed home to find that my mom (Nana) had called for advice as to whether she should have my dad (Paco) take her to the walk-in or the emergency room when she had suddenly exhibited symptoms of a gastrointestinal bleed.

B advised the emergency room.

B had called my cell phone, hoping that I would put my ringer back on before leaving the bookstore so that I could get to the hospital more quickly, but, as it turned out, it was good that I had gone home first. They phoned again during the few minutes I was home to say that Nana was being put into a room in the ER. I grabbed a few magazines that I could leave with my mother for entertainment during the inevitable waiting times and headed out to the hospital.

The ER waiting room was filled to overflowing and there were so many patients back in the unit itself that some were in the hallway. My mom was in a room, though, because they needed to keep her hitched up to cardiac monitors, given that some of her symptoms could have been a second heart attack. Her heart was okay, but she needed to stay in the hospital to figure out where the bleeding was occurring. There were no rooms available in the hospital proper, so, about 2 AM, she was moved to another section of the ER that had beds rather than gurneys.

The next day, the gastroenterologist who was on weekend call, Dr. B., came in and we decided that it was best to do a colonoscopy on Sunday morning and Nana was admitted to the GI unit when space became available. The colonoscopy revealed that Nana had developed arteriovenous malformations (AVM) and was bleeding from several different sites, which Dr. B. cauterized. Dr. B. explained it to us as being similar to varicose veins that break through to the surface and bleed. Unfortunately, the meds that Nana needs to take due to her cardiac stents don’t help matters, as they act to prevent blood from clotting easily.

Although Nana had lost quite a bit of blood, the doctors decided not to transfuse but to let her try to build back her blood count on her own.  This didn’t turn out so well, as Nana had to spend several days in the hospital about a month later when her low iron levels started to affect her blood pressure. They finally gave her a couple of units of blood and, while her iron level isn’t quite up to what is considered normal, she is slowly gaining strength and getting back to some parts of her old routine – with, we hope, more progress to come as spring continues to unfold and we celebrate Mother’s Day and her birthday.

There is no way to tell when the AVMs may recur, so, for now, there are weekly blood tests so that, if she becomes more anemic, the gastroenterologist can intervene before she loses too much blood.

Vigilance is our friend, as is following through on recommended treatment, medication, and lifestyle choices. It’s what has kept Nana and Paco as active as they are as they age.

But fingers crossed that we don’t have any more medical adventures in the coming months.

We all need a rest.

SoCS: crisis du jour

OK – this is another one of those weeks where I am writing on Friday morning and scheduling the post for publication tomorrow. The weekend is going to be busy as there will be open mic poetry tonight – my second time reading, if I make it – you can read about the first here.  Saturday morning we will scoot up to Syrcause to pick up our younger daughter to bring her home in time for my dad’s rescheduled 90th birthday dinner. There will be a post about why it had to be re-scheduled eventually. Have I mentioned yet how I’m sort of behind on posting?

At any rate, my sisters and families will be coming up for the festivities which will be at a local Mediterranean restaurant, so there will be much yumminess and laughter and storytelling and dessert.

Provided things don’t get derailed by the crisis du jour.

It’s become a bit of a standing joke with me that I can’t make a plan because something will intervene. I wrote about the most dramatic of these events here. Long post but the condensed version is that my parents unexpectedly wound up in the hospital for two days at the same time with two totally unrelated problems.

Right now, I am waiting to hear back from my mother-in-law to see if we need to get her to her doc or to get an X-ray to investigate why her back pain has ramped up – after we thought we finally had her pain meds adjusted properly. I admit I’m operating on not a lot of sleep, mostly because I was worried about what is going on.

Right now, I’m trying to breathe and not make something into a crisis before its time. Maybe it’s just a pulled muscle from PT. Not really crisis du jour.

Please?

[Update from Friday night:  My mother-in-law’s doctor decided to just let things ride for the weekend and she improved through the day today. So fingers crossed that we make it through the weekend crisis-free, awaiting a previously scheduled Monday afternoon doctor’s appointment.]
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Linda’s prompt for Stream of Consciousness Saturday this week is “-jour-“: add a prefix or suffix to complete it or use it as the French word for “day.”

Please join us!  Details on how here:  http://lindaghill.com/2015/04/10/the-friday-reminder-and-prompt-for-socs-april-1115/

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SoCS: eyedrops

Last night, I watched my mother put in her prescription eyedrops. In the ER. Before we saw the doctor. After she had been there several hours. Before they decided to admit her.

I usually try to read the Stream of Consciousness Saturday prompt from Linda on Friday. If my Saturday is supposed to be busy, I will write it on Friday and schedule the post to appear on Saturday. Friday afternoon when I read:  Your Friday prompt for Stream of Consciousness Saturday is: “I/eye/aye.”  Use one, use ‘em all – just make it yours. And have fun! I fully expected to be leisurely writing my SoCS post Saturday morning before setting out on other tasks or just puttering about the house. No big plans.

Instead a Friday night call from the ER sent me over to the hospital, where I stayed until after midnight. I spent a good chunk of the day there today and will be back at the hospital tomorrow morning while my mom has a test. If things go well, she should be released tomorrow afternoon.

I hope. We all hope.
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This post is part of Linda’s Stream of Consciousness Saturday.  Please join in!  Details here:  http://lindaghill.com/2015/03/20/the-friday-reminder-and-prompt-for-socs-march-2115/  Badge by Doobster@Mindful Digressions

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