Tag: May

SoCS: walks – or not

I used to enjoy going for walks with my spouse but haven’t been able to for most of the last 15 months due to my current health struggles.

You can read more about that here, in the context of today being the last day of EDS/HSD Awareness Month.

I used most of my energy getting that post together, here in this early morning timeframe, so this is a short Stream of Consciousness Saturday post. Linda’s prompt this week is “walk.” Please consider joining us or just stop by Linda’s site to wish her and her family well as they are recovering from illness at this point.

EDS/HSD Awareness Month

May is Ehler-Danlos Syndrome/Hypermobility Spectrum Disorder Awareness Month, begun by the Ehlers-Danlos Society to bring attention to this family of connective tissue disorders which affect millions of people around the world, many of whom will take decades to be diagnosed while others will never know for sure what causes their bodies to exhibit an unusual constellation of symptoms. I apologize for being late to the effort, although I did do one awareness post here for One-Liner Wednesday and shared some informative posts via Facebook. It’s been a bit of a rough month for me.

I am one of those people who is yet to be officially diagnosed, despite decades of symptoms, though I will spare you the details of my specific case.

The Ehlers-Danlos Society is a great resource for information about both Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD), both for individuals and for clinicians and researchers. It also plays a role in funding research around the world for these connective tissue disorders. There is a lot to know but I will just give a broad outline here.

EDS is a group of inherited connective tissue disorders, currently classified into 13 types. Twelve of the types have a known genetic cause, where a chromosome affects a particular protein, and can be identified with testing. Some of these affect less than one in a million people.

The largest group of people with EDS, though, have hypermobile EDS (hEDS), estimated to affect 3,100-5,000 people per million. While it is known to have a dominant genetic inheritance pattern, the genes or groups of genes responsible have not yet been identified. There is some question among researchers and clinicians if hEDS should remain classified as a form of EDS or if it should be considered as part of Hypermobility Spectrum Disorder in which the hypermobility is more widespread and severe than in most people with HSD.

In HSD, people exhibit joint hypermobility/instability in at least one joint, which may suffer frequent sprains, pain, subluxation/dislocation, joint or soft tissue damage, and/or early arthritis. They may also have poor proprioception, which means they can have difficulty with awareness of their bodies’ position or movement, for example, being clumsy.

They may also have symptoms over many parts/systems of their body. Fatigue, headaches, gastrointestinal problems, autonomic dysfunction, and anxiety are some of the kinds of symptoms that can be part of HSD, with each person exhibiting a different constellation of symptoms which may shift over time. This makes sense in that we have connective tissue throughout our bodies, so symptoms as diverse as unusually stretchy or delicate skin, a frequently sprained ankle, irritable bowel syndrome, and blood vessel problems can all be related through differences in the way connective tissues behave in the body. We don’t know how prevalent HSD is, because the current classification system dates from only 2017, our current medical system tends to silo various body systems into separate specialties – without there being any specialists in connective tissues – and most primary care providers haven’t been taught to recognize it. This often leaves patients in the uncomfortable position of having pieced together their own diagnosis but not being able to find a doctor willing to consider it.

I feel that it is important to be properly diagnosed, even though, as inherited conditions, EDS/HSD cannot be “cured.” It helps to know about the underlying cause in order to treat symptoms more effectively. For example, physical therapy may need to be prescribed for a longer period of time with more gentle techniques to avoid further tissue damage. Surgeries may need to be modified to better support lax connective tissue. Knowing what other symptoms may arise that are connected to EDS/HSD is also helpful, along with awareness that connective tissue disorders can help explain some disorders, such as irritable bowel syndrome, that have often been written off as idiopathic.

As EDS/HSD Awareness Month draws to a close, I’d like to thank the Ehlers-Danlos Society for their valuable work in raising awareness of these conditions, advocating for patients, disseminating information, and spearheading research into these connective tissue disorders. Maybe, as more people and, critically, more health care providers learn more about these disorders, patients will be diagnosed and treated more quickly and effectively.

I hope.

(About the photo: Doctors are taught in med school that “when you hear hoofbeats, think horses, not zebras.” However, sometimes, it is actually zebras! Zebras have come to signify EDS/HSD. My daughter T gave me this zebra unicorn pin in that spirit.)

No-Mow May

In the United Kingdom and parts of the United States, there is an initiative called No-Mow May, encouraging people not to mow lawns (or a portion thereof) during the month of May in order to encourage the blossoming of wildflowers which provide food for bees, butterflies, and other pollinators.

In the spirit of No-Mow May, we have limited our lawn mowing in our front yard and left most of the back yard to grow on its own. The front yard starts things off with dandelions, which we let blossom but then wind up having to mow for propriety’s sake. B leaves the lawnmower on the highest setting, though, so that the spent dandelion stems get cut while sparing the violets and white clover that follow. Even though white clover is not native, our bumblebees seem to enjoy it. It’s also helpful that we use a battery-powered mower so that the plants don’t have to contend with the heat and exhaust of burning gasoline.

Besides those, the backyard has waves of additional flowers, including wild strawberry, bluets, forget-me-nots, speedwell, buttercups, celandine, ground ivy, and fleabane. While these help our pollinators, they also provide food for other animals, including rabbits.

Besides the lawn, we have other spring-flowering plants, including bleeding hearts, PJM rhododendron, dwarf daffodils, lily-of-the-valley, brunnera, amsonia, and our heirloom rose bush.

Although not all the plants are native, our native pollinators frequently visit them, which is important to us, especially our bumblebees. When we had a landscape plan drawn up and planted in fall 2020, we requested native plants, but some of the plants that grow wild in our yard are non-native species that are now considered naturalized in our area, though not invasive. If we do find invasive species, such as garlic mustard, growing, we try to pull them out so that they don’t spread. It is also helpful that we have had wildflowers growing as part of our lawn for decades. We never use herbicides. The mix of plants and not mowing it too short also make our lawn drought-resistant. We never have to waste water by spraying it on our lawn.

We may stretch No-Mow May into early June in the backyard so that the daisies that have started to grow up but haven’t blossomed yet have a chance to do so. Perhaps, B will do what he has done in some past years and mow around the daisies until they have had a chance to flower.

Do people observe No-Mow May – or some variation better suited to your geography, like Low-Mow May or No-Mow April, where you live?

(a different) Mother’s Day

In the US, we are observing Mother’s Day today. While its origin was in a call for peace after the Civil War, today it is celebrated as a tribute to mothers of all types and ages.

Since the death of my mother in May, 2019, Mother’s Day has felt bittersweet to me, as it brings back that time when, within two May weeks, there was my mom’s last Mother’s Day, birthday, and the date of her death. It’s complicated further by having daughter E and granddaughters ABC and JG five time zones away.

This year has brought the additional worry of a family member’s upcoming surgery and the possibility of an underlying disorder yet to be diagnosed.

Then, there is the general upheaval in the US and so many other places in the world, war, hunger, the climate crisis, disasters, and I will end the list here, but we know it is much longer.

It’s a lot with which to contend and I’m not coping very well.

I mentioned in a Stream of Consciousness Saturday post in mid-April that I was hearing a sound in my left ear. This, along with some additional symptoms, has led to several primary care visits, a diagnosis of tinnitus, some attempts at treatment, and, on Friday, a decision to order an MRI to rule out various tumors or other abnormalities.

Of course, there is the possibility of not “ruling out” but discovering.

I admit that I’m struggling. I’m practiced with blocking things out or setting them aside to concentrate on caring for family members. Part of my problem right now is that the timing is unfortunate as I am the main driver and errand-runner and don’t want to be out of commission when I’m needed to help with surgical recovery and follow-on medical appointments. I know spouse B will drop everything at work to take care of things but I also know that his project is in a critical phase right now.

I need humility, trust, and the grace to step aside and let others take over the work I should or have been doing and put other things aside for a while, but it’s hard and I’m worried and tired.

Maybe they will examine my head and not find anything.

Wait. That doesn’t sound right.

Maybe they won’t find anything dangerous.

Maybe, I can get a grip when the MRI is actually scheduled and on my calendar. After all, this is not my first rodeo with medical mystery ailments. Some of them have even been mine. I’m just more annoyed with my own. I know I need to channel some of the compassion I have toward others and apply it to myself.

And maybe take a nap.

It’s been helpful to write this down. I am questioning whether or not it is wise to post it, but have decided to do so because authenticity is part of the charm? hallmark? conceit? of Top of JC’s Mind.

And, yes, it’s Mother’s Day and B is making lamb spiedies and grilled asparagus with his homemade tiramisu for dessert.

And there have been sweet cards and a present.

And the lilies of the valley are starting to bloom.

They were my mother’s birth flower and a favorite of hers.

The photo is from my mother’s 87th and last birthday, lilies of the valley from our yard and cards from my father and their artist-friend Jim.

Miss you today, Mom.

a May flower

This spring has been slower to warm than usual. Most years, we have lilies of the valley by Mother’s Day or by Nana’s birthday on May 16th at the latest. Lilies of the valley are the birth flower for May and we always picked bud vases for her while they were flowering.

Years ago, B and I transplanted a few pips from our childhood yards in New England to our home in New York. Lilies of the valley “spread aggressively” as horticulturists say and we now have a patch at least 25 square feet (2.3 square meters).

I’ve written previously about some of the hidden blessings of not having to deal with the complications of 2020 last year as we spent our final months with Nana. We were able to bring her beautiful, fragrant bouquets of lilies of the valley for her last birthday, which would not have been possible with the later spring blossoming this year and the restrictions on visiting skilled nursing facilities.

Lily of the valley, with Paco’s card to Nana and birthday card made by artist-friend Jim

Nana’s ashes are in an indoor niche at a memorial park in our town where fresh flowers are not allowed. I’m hoping someday to find some beautiful artificial lilies of the valley to leave there for her, so there will always be a bit of spring and her favorite May flower nearby.

a very different Mother’s Day

Today in the United States, we are observing Mother’s Day, which was originally begun as a call by women for peace, but that is another story.

I have been dreading Mother’s Day this year because it is the first since my mom’s death last May.  She was under hospice care in the nursing home, but we were still able to be with her and bring cards and flowers and treats. I keep thinking about how different it would have been this year with pandemic protections in place. No visiting is allowed. I know that is necessary to keep the virus away from such vulnerable people, but it must be so difficult today for all those moms, grandmothers, and great-grandmothers to be separated from their loved ones.

I am grateful to have daughter T here with us. We got to videochat with daughter E and granddaughter ABC. ABC showed me a special drawing that she and her dad had made for me for Mother’s Day. They were able to scan it and B printed it for me, so now it is on the mantel. It was fun to see ABC dancing about the living room, to hear her sing and “play” the piano, and hear her ever-expanding vocabulary. She will turn three next month. This is also the first Mother’s Day since they moved to London after E’s spousal visa finally came through. Though I wished E a happy Mother’s Day, the UK celebrated weeks ago.

It has also been unseasonably cold here. We have had snow this weekend, which is late in the spring for us. No outdoor flowers for Mother’s Day gifts this year!

Because of my mood and the pandemic restrictions, our celebration here will be low-key. B made Chelsea buns for breakfast, which were amazingly delicious and hot-from-the-oven. For supper, he is making lasagna, using the recipe that my mom always did. It is definitely the comfort food that I need today.

It was also comforting to watch mass recorded from television. The one I chose was my mother’s favorite when she was homebound for so many months. Of course, they mentioned Mother’s Day and included prayers for mothers. It was another way to remember my mom on this special but difficult day.

87

Nana's 87th birthday
Lily of the valley, with Paco’s card to Nana and birthday card made by artist-friend Jim

Today is my mom’s 87th birthday.

Because her heart failure symptoms cause her to be sleepy a lot of the time, it is difficult to predict when she might be alert, so we keep celebrations ad hoc and catch bits of time with her as circumstances allow.

This morning, I picked her a few lilies of the valley from our (rapidly spreading out of control) patch. The original pips came from the yard of my childhood home in Massachusetts and from the yard of B’s home in Vermont, only a few miles apart. Lily of the valley is the birth flower for May and I have often picked some for Nana’s birthday. Our spring this year has been chilly and damp, so they have just begun to bloom with only the very bottom bells open, but I picked some regardless and will bring a few more when they open more fully.

On my way up to the skilled nursing unit of my parents’ senior living community, I swung by Wegman’s grocery store and picked up an individual size fruit tart. Nana would often buy large ones for special occasions, so I thought she might enjoy a little one for her birthday. I was pleased that, though small, there was a nice variety of fresh fruit over the custard, a large halved strawberry, a piece each of pineapple and kiwi, raspberries, blueberries, and blackberry. Nana was quite sleepy this morning, so I put it in the refrigerator with her name on it so she can enjoy it later today, or tomorrow or the next day, depending how she is feeling.

I brought her a card, too, which had bleeding hearts, which are also in bloom now, on the front. She has lots of cards from family and friends, including a packet of cards from people at her church.

A bit later in the morning, my daughters E and T and granddaughter ABC arrived. Despite ABC’s careening about the room, giggles, and squeals, Nana slept a good share of the time that she was there, but there were times that she was awake for kisses and a bit of lunch, some of which she generously shared with Ada. Her lunch tray arrived with a bonus, a large vanilla cupcake with white frosting and decorations. Nana decided to send it home with us instead of eating it herself. After all, she does have a fruit tart waiting for her, as well as some coffee ice cream sent over by a friend. When she is ready for one or the other of them, Paco will hop on his scooter and fetch them from the leisure room refrigerator. Of course, Paco got some kisses from ABC, too.

Both of my sisters called while I was there. My older sister just returned home from a few days of visiting and my younger sister and her family will arrive for a short visit this weekend. The main reason for the trip is my niece’s commencement ceremony in Cortland. She will be a newly minted teacher, with a job as a kindergarten teacher and a master’s program in New York City all lined up. Woo hoo!

B and I made another quick trip up for a visit in the evening, bringing another card that had inadvertently been left at home in the morning and some of Nana’s favorite toiletries.

We were grateful that we were able to celebrate Nana’s 87th birthday with her, or, as Paco says, the beginning of her 88th year. Last year, we celebrated her birthday at our local hospice residence. We didn’t think that we would be granted another whole year with Nana.

We all love that we have had this time with her.

a May birthday

Yesterday, my mom, known here as Nana, turned 84!

I had planned to take her and Paco out to supper; B had a business dinner he had to attend, so he could not join us. Unfortunately, late last week, Nana came down with a horrible chest cold and we decided that I would get takeout from the restaurant instead.

We were lucky in that her cough improved enough that she was more rested and comfortable for her birthday. She got calls from my two sisters and her three grandchildren who are stateside and a special youtube rendition of “Happy Birthday to You” from my daughter E and her husband L, who are currently visiting his family in London. There were lots of birthday cards, too.

I was happy to see that Nana had gotten some of her appetite back when I arrived with the dinners at 5:00. She and Paco really enjoyed their main course, but did save room because I had brought a surprise dessert.

I had made a side trip to one of the local Italian restaurants to buy panna cotta for Nana. They change the flavor they offer on a regular basis and the day’s offering was cappuccino with hazelnut. I hoped Nana would like it.

She did! Usually, when we get it when we dine out, she shares it with someone else, but, for her birthday, she ate it all herself! It was great to see her enjoying it, especially as her appetite had been so low the few days prior.

Just to clarify, I also brought a carrot cake for Paco and tiramisu for me, so we all had a treat.

Nana said it was one of the best birthday dinners she had had in a long time, so mission accomplished.

Best wishes, Mom, for your 85th year! Thank you for making our family what it is and for showing us that something as simple as dinner and dessert together can be a great joy!