The Chronic Pain of CVS



Sculpture by O. Zadkine, Paris - photo by Green Eye


  CVS = Cyclic vomiting syndrome


Cyclic vomiting syndrome (US English) or cyclical vomiting syndrome (UK English) (CVS) is a condition whose symptoms are recurring attacks of intense nausea, vomiting and sometimes abdominal pain and/or headaches or migraines. Cyclic vomiting usually develops during childhood at ages 3–7; although it often remits during adolescence, it can persist into adult life. (Wikipedia definition, link below post)
 ***

The young woman awakes, hoping for ‘normal’ but fearing the worst. Will there be more gut-wrenching pain that wraps around from the stomach to the back, and the unbidden nausea that is a chronic side effect? On a good day, she will be able to get up early or mid-morning and eat breakfast. If that poses no problem, then she may be able to do some household chores, or even work when that occurs. When it’s a bad day, everything squeals to a halt until the pain is attended to or runs its course for one to several days.


For relief and the ability to do the basic things, she has medications to help quell the effects of the CVS syndrome. There are pain medications prescribed including nose sprays or pills that melt in the mouth, hydration to replace the lost fluid, and nausea pills. Sometimes a combination of these will work and sometimes they won’t. As a last resort, the doctor’s office will administer a shot to stop the spasms of the stomach. Sleeping for several hours is usually needed to recover from an intense bout, or incidences that last longer than three days.

A mild attack of CVS will last one day, but the length of time can vary depending on other factors that come into play. Hormone fluctuation, stress, a lowered immune system due to a cold, lack of sleep/insomnia -- any of these can trigger the start of the pain spasms in the stomach. One doctor said we all get butterflies in our stomach, but a person with CVS gets “tigers” in their stomach.

There are websites for this rare condition, but no cure that this young woman has been able to find. Managing the disease may be an ongoing factor in her life, even though some believe that the frequency and intensity will reduce, if not disappear at certain ages, e.g., after puberty, in early adulthood, etc. That hasn’t happened yet. Various tests can be scheduled to check the condition of the stomach. Other tests which must be done in a hospital, such as scoping of the upper or lower digestive system, are sometimes required after other causes such as ulcers are ruled out.

All the basic mundane things that we have to do everyday become a real chore when the body fights itself, or causes intense pain. When that pain is internal and not visible like a wound, others can doubt its validity, forcing the person who is ill to be constantly on the defense.

CVS affects males and females, with more incidences occurring in the female gender. That may be due to the difficulty in diagnosing this rare condition that has symptoms common to several other diseases. The search will be ongoing to find better solutions, but finding support is difficult when costs are being cut in many health services. Researching several different mobile nursing services revealed that they aren’t prepared to take on-call requests for administering injections.
 
There are many voices in the cities that we don’t hear. This post is an attempt to promote understanding of this debilitating disease, by describing some of the challenges of the person coping with it. 

Sites to check for more detailed information:

Cyclic Vomiting Syndrome Association

Definition of the disease

National Digestive Diseases Information Clearinghouse (NDDIC) (US)

***
Reference Post: The Parent, the Child and the Disability (a parent's viewpoint)


NOTE: The name of the person referred to in this post has been withheld for privacy.

***

Mural in Vancouver, BC - photo by DGH

Elders: Support Seniors in Care Homes




This post will detail from personal experience what to be aware of when your parent or senior relative becomes a resident in a care home. I’m referring to subsidized facilities that I’m familiar with, which are overseen by the health authority in our district. These points were learned in the three and a half years that our relative has been in such a facility. Most of the points will apply to anyone, but the best place to start getting information is with the family doctor.


Visit often.


•  The connection with family is usually a factor in how well the resident accepts being in a care facility. Nearly all seniors will go through the denial phase. Independence is dear to all of us. They may beg to come home, or get surly and refuse to acknowledge you. Each person handles it differently. If Alzheimer’s or dementia is a factor, they won’t remember what you told them the day before.


•  Reinforce the senior’s memories by talking of things that interest them, update them on the family news, play cards, work on a puzzle in a smaller setting than the group activities of the care home, or just wheel them around the floor if the elder is in a wheelchair, walk with them if they’re still mobile. Doing something that’s not part of their daily routine is what makes the visit a little more special.


•  Be aware of other residents and learn who will try to talk you into releasing their seatbelts or pushing the correct elevator buttons so they can “escape”. Keyed or touch pad entry doors are in many newer care homes to prevent unauthorized excursions by residents.


Mix up the schedule of your visits


•  In any reputable care facility, this won’t make a difference, but dropping in unannounced is a good way to see what an ordinary day is like for a resident. Weekdays and weekends employ different staff ratios.


•  Be informed. Relatives can ask to be contacted if the resident has been ill, to be advised when in-house needs are required (like hip pads for fragile bones), and should inquire for a list of expenses if a patient’s trust fund is used for providing simple needs. Some care homes provide auxiliary services such as shoe fittings, wheelchair sizing, podiatry services, and haircutting via mobile contractors who come to the facility.


• Occasionally drop in for the meal times and offer to assist by feeding your parent. This enables you to observe how they handle the other patients and also to drop hints about your own parent. Sometimes that interaction results in better treatment from the staff, especially if the parent if hard of hearing or has poor vision. The care home staff need to know the specifics to understand why a resident may not hear an instruction, or answer a question.





Another Era by DGH


Get to know some of the health care staff at the seniors’ facility.

•  Our relative attended senior activities for a couple of days a week for several months before being assigned to that facility. As a result, the move wasn’t as traumatic as it could have been. The place was somewhat familiar, and the people managing the daily senior recreational programs were the same ones who planned activities for the residents.


•  Greet the health care staff on your visits. Find out which nurse is assigned to your relative; she can be a helpful contact at the facility. We also will greet those residents who are familiar to us, and who have talked to us as we helped feed our relative, or attended an event at the care home. Most residents respond in kind, but some may frown or rebuff your efforts.


•  If you know who to contact in case of any incidents or accidents which are not fully explained, you will save yourself time and trouble. It’s your right to have a full accounting by owner, coordinator or nurse when any incidents result in bruises, or injuries requiring x-rays. It’s always better to ask for facts first, before jumping to conclusions.


Attend events organized by the care home.


•  Family meetings dealing with particular issues, such as Alzheimer’s Disease, diabetes, dementia or issues of health which affect all residents are held monthly or bimonthly. (e.g., flu shots for residents and visitors) Seasonal events will vary by facility, and may be dependant on staffing levels or volunteer help. The type and scope of events planned for residents is important, when a majority of residents are confined to wheelchairs.


•  Volunteers entertain the residents during the Christmas holiday season, and at other times throughout the year. Church services may be available for those wishing to attend on site with their relative. Residents are allowed some choice, but group activities are encouraged. This promotes the feeling of community.

 
Say thank you at Christmas.


If your budget allows, a group gift is always appreciated, or at the minimum send a personal card thanking the staff for their efforts throughout the year. By staff, I’m referring to the nurses, health care workers, and orderlies/attendants who help in the daily running of the facility.




The Fantasy Care Home on Moon Base

 Finally. . .

Keep yourself informed about the care facility in which your relative lives. That usually requires your physical presence, if you live close enough. Ask questions and keep your eyes open. Our relatives rely on us to support them.

Don’t assume. Be in the know.

Around the City-Vancouver: A Backyard Festival, Community Gardens & More

Vancouver, BC Cityscape from Stanley Park - DG Hudson

SUMMER FESTIVALS:

Festivals abound in the summertime in large and small cities, whether they focus on music, family activities, theatre, or unique happenings.  One unique neighborhood event I read about in the Vancouver Sun told of several homeowners staging an In The House Festival.  This happens in a heritage area of Victoria Drive, in Vancouver, British Columbia in an effort to increase community spirit and to offer family friendly activities.

Reference:  Article by L. Kane, Vancouver Sun, June 3/11
Details at:  http://www.inthehousefestival.com/

http://www.vancouversun.com/entertainment/Festival+transforms+backyards+into+performance+spaces/4886005/story.html

***

GREEN THINGS:  Community Gardens

Interested in gardening but have no outside area?  Check out community gardens, a great way to grow some of your own food, herbs, or flowers.  Many cities have these communal gardens where plots are either assigned or work is shared, and the harvest allotted accordingly.  Vancouver and many of its surrounding municipalities encourage the residents to participate in this effort.

More information is available at the link below. 

Reference:

City of Vancouver site

http://vancouver.ca/commsvcs/socialplanning/initiatives/foodpolicy/projects/gardens.htm

Monet's Garden in Giverny, France -'Green Heaven - DG Hudson

***

MOVIE RESEARCH:  Midnight in Paris by Woody Allen

Everyone seems to be fascinated currently with the Jazz Age in Paris, when the city was the expatriate centre of culture.  I'm one of those who can't get enough of reading about that time period.  As a result, many books and movies are being made which focus on the attributes of the most loved and visited city in the world. 

This movie is currently playing in many cities.  I plan to see it since I've recently visited the City of Light, and just watching the trailer brought back my own memories of Paris, the Isle St. Louis, romantic bridges and the Rue de Rivoli.  It's a city that's hard to forget.

It's a movie about choices and facing reality.  Woody Allen has created a romantic fantasy about the meaning of a place, in particular, Paris.

Eiffel Tower, Paris - by DG Hudson 2010

DRIVING IS GOING TO THE DOGS

The photo following was taken at a local parking lot.   Don't they say that dog owners and their pets start to look alike?  Is this what they mean?  See what happens when the dog is allowed to sit in the driver's lap?  Then, they want to drive. . .

(photo taken with Blackberry camera on the road)

Beware:  Dogs Who Drive - Mobile DGH

***
This post is a compilation of interesting events and things observed in my treks around the city and its surrounding area.  Do you know of any interesting events that show cities are trying to engage their residents to take more pride, and get to know who is in your neighborhood?  As shown in the Woody Allen movie, even if they are the musings of an aging director, some cities like Paris cast their spell on us.  Vancouver can do that, too.  How about your city?

***********************************

UPDATE JUNE 6/11:

Email received from C. Leamon, author of Writing up a Storm:

"We are so fortunate in BC as there is so much going on through the summer. In the Gulf Islands we have our Saturday market on Mayne Island, from ten until one every Saturday from May 21, or around then, to Thanksgiving. There are some talented artisans and you can also buy local produce. It's a great meeting place and community event.


Celia"
*********************

Sounds like a great idea for a summer day-trip.   

The Elder Dilemma



Waiting. . .  the Florida Coast (Photo by DG Hudson)


North American natives call them Elders, a form of respect towards those most of us call grandparents or seniors. We have an aging population which forms a large demographic segment. That fact isn’t going away. How we deal with them tells a lot about our capacity for caring and about the fears we have for their safety. It’s an issue most of us will have to deal with, if we have parents who are unable to care for themselves any longer.


Elder care is an uncharted area for most of us, but we need to know what to do when we see the first signs of dementia, or Alzheimer’s. Seniors can be coping with an unreliable memory in addition to the loss of adequate sight or hearing. The symptoms can appear gradually and go unnoticed. The elderly will attribute their lack of balance, forgetfulness, or confusion to other causes rather than admit they have lost the ability to be independent.

We need to ensure they are treated with dignity and not shunted aside. If home care is not an option, then you will need to research care homes (as in full care), and have the senior assessed as to whether they have dementia or other age related illnesses.

Decisions will have to be made regarding power of attorney (if the parent is the only survivor and is at the onset of dementia), and applications made for registering a senior in a suitable facility. Depending on the senior’s budget, various levels of care are available. Application for subsidy assistance for low income seniors is made to the local health authority in most instances.

Warning Signs

• Confusion
• Losing Money or Valuables (this can include dentures or hearing aids)
• Getting lost & driven home by police
• Taking longer than usual on public transit, or getting injured (falling getting on or off public transit)
• Inability to state their own address or telephone number, or other basic information

Even when asked, a senior won’t admit to any loss of the five senses or their own physical abilities, since that would mean losing some of their own independence. We, as caretakers or relatives, have to be aware of the warning signs early on to prevent the senior having an accident. Find out what you need to do so you’ll be prepared. We can help them keep their dignity.

Key Points

Recognize when home care isn’t enough. Be realistic about the senior’s needs as well as your own capabilities. Seniors must be assessed for competence in caring for themselves, and for the early warning signs of dementia or Alzheimer’s. This is done by the family physician and the local Health Authority.

Research your options. Information regarding programs for seniors is found under Senior Care or Social Services departments. Discuss legal implications such as power of attorney with the parent.  This needs to be done before the memory loss escalates. To change power of attorney requires a notary public and the parent needs to be able to understand what he/she is doing (signing over legal responsibility to another person).

This post is written from personal experience. It can be very stressful when you don’t know what to do or who to call. A good place to start is to talk to the senior’s family physician about any concerns. 

Ask questions, it’s the only way to start getting answers. 

Any questions or comments regarding this post are welcome.
***


Calm and Balance - Florida seacoast  (photo by DG Hudson)

A Street Cat Tale

Name’s Slick, that's me on your left. My pack chose me for my shiny black and white fur coat and the dashing white lightning streak across my nose. As I look back after fifteen years, I realize I've been one lucky cat.


Life for me started on the street as a homeless stray that no one cared about, orphaned by a speeding car. They never saw my loving, tender mother slowly making her way across the street. Mom, wake up, Mom, I called. I meowed and meowed, but she didn’t move. I was frightened. I was the last of the litter to leave, having been the last born. What was I going to do? Mom hadn’t shown me how to hunt yet, I was only ten weeks old. I knew nothing about surviving.

Feeling alone and cold, I crawled into the plastic bags that blew about the market area. They kept me warm and hid me from those who frightened me. Humans who lived in the area felt sorry for me and gave me handouts, but I soon learned to hunt small things that weren’t as fast as me. Amazing what instincts come out when you’re hungry.

I could smell the aroma of fish in the boats that docked nearby. It made my stomach growl. Some of the fishermen would give me leftover bits of their haul.  The tough cats and dogs, who scrambled for their bit of food, terrified me. When the big metal cars that humans called trains rattled by, I made sure I was far away. They were noisy, heavy-sounding and the shrieking of the wheels made my ears hurt.

Humans don’t like stray animals hanging around. I found that out when a hunter in a big truck caught me with one of his nets. I had done nothing but try to live on the street. I didn’t understand what was happening. Was this the end? I was taken to a place with many cages inside, and other animals like me, all squalling and making noises. Some of the very tiny ones were very quiet. I was frightened. Maybe being lonely hadn’t been so bad.

After they settled me in one of the cages, I was fed and given water. For the time being it appeared I had only lost my freedom, but was worse to come? Humans came in at different times and looked us over. Some animals were taken away, never to be seen again.

For a few days I lived in that cage, before a human pack of four came to look at all the cats. They were looking at the cage beside me, when I took a chance. I reached out with my paw as far as I could to get their attention. They saw me. The shelter humans asked if they wanted to hold me. Yes! Yes! As they rubbed my fur, I rubbed my nose on each of them so everyone knew they were marked as MINE. That was the turning point in my life. Those humans adopted me into their pack and took me home. My first and only home, it was a marvel for a street-born cat. I had a room to myself, the place where I was put at night. It was warm, with many soft places for a cat to sleep. It took me some time to figure out what a ‘catbox’ was - how’s a street cat to know? Oh, I’m supposed to use that, not just any corner. Soon afterwards, I became an ‘indoor’ cat after a certain (ahem...cough,cough...ack, a hairball) operation.

I became best buddies with the alpha male in my new pack, since he let me do the things a normal outdoor cat gets to do. Like climb trees, chase squirrels and pretend I was lord of my backyard domain, but only when he was outside. The softer feeling females cuddled and petted me. I thought of them as my sisters, so we played and had mock fights. Sometimes I slipped up and scratched one of my pack sisters. Thank goodness they didn’t declaw me – what’s a cat to do without claws, I ask you? There was one female human who seemed to be the mother for all the pack. That was feeding lady, the alpha female. She let me know when I was in trouble, just because her voice became very hard and loud. When that happened, I would lie quietly and try to win her favour back. I used the old passive cat routine. That ruse worked most of the time.

Later in my life, I put on a few pounds from all the good food. My favourite was salmon. I could smell it cooking from anywhere in the house. About that time, I started to feel like an old cat, achy and always hungry. After several visits to the doctor where I got stuck with those sharp things called needles, I learned I had diabetes, whatever that is. I had to be stuck once or twice a day. The alpha male had to give me that sticking, feeding lady just couldn’t. It didn’t hurt, as the needle was very small. I lost all my fat, and my appetite became more normal.

I didn't like going to that place called the vet’s. It was never fun. Howling and noises like you can't imagine came out of the back. The human who checked me out was kind and gentle. If feeding lady held me, I stayed calm, but I sure yowled while we waited, to let them know I didn’t like the place.

Now, I'm back to my usual routine.  I eat, I relax, I go on the deck, I relax, I come back in to see what's new, I curl up in my favorite chair, I nap, I eat, and relax a bit more until it's bedtime.

A cat couldn’t ask for a better life. 

A safe place to live, good food and many happy years as part of a loving pack. Cat heaven can’t be much better than this. Slick signing off.

End

It’s Your Life - Prove it

Egyptian Tablet - Louvre Museum - Paris (by D.G.Hudson)

Write it down, Photograph it, Do Something!

Humans have always struggled to understand their lives, and to put it in perspective by writing about it, photographing events or making a video of people, places and interesting things. What we know of previous civilizations is due in part to what was left written on cave walls, on stone tablet fragments, or other surfaces which managed to survive.



How do you save information about your life? With technology today, there are many ways to connect and share with your family online. Information about social networks abounds if that is your chosen method. But down the line, will your descendants know what their ancestors did, how they travelled, or interesting facts about the family? Storage is important - whether online or manual. Taking the time to create this information, and deciding what is to be retained will be an ongoing task.  The best time to start is now.



Written Stories:


• Family stories - old tales heard at your grandpa’s knee, ghost stories relating to family members or places, what happened to some of the relatives - war, travels, or unique occupations, e.g., captain of a ship, pilot, actress, writer, etc., family tree origins

• Interesting Relatives - how ‘Harry met Sally’ (substitute appropriate name of parents or grandparents), identify far-flung pockets of relatives in other places, elaborate on ancestors who ruled the family - a grand matriarch or undisputed patriarch, any ‘black sheep’ who left the fold, or a grandfather who helped track and catch a famous criminal


• Interesting Trips - think exotic locations, literary hotspots - Key West (Hemingway), Paris (the Lost generation), New York (the Village), San Francisco (Beat poets & writers), OR adventure trips taken, i.e., sailing a catamaran to the Dry Tortugas - an old pirate hangout, whale watching on a Zodiak in the Pacific, being on site at the southern California grunion spawning - an event which coincides with lunar tides


• Work tales - (no gossip please) certain occupations lend themselves to this more than others, e.g., an actor’s experience as an extra or background, railway workers helping farmers during a whiteout, acts of valour, and especially humorous incidents


• Music History - concerts attended (set-lists if available), autographs collected, names of musicians, location and dates of events (e.g., Woodstock, last concert at Fillmore East,)


• Education Trail - schools attended, specialized courses, any honours or interesting facts, i.e., seven generations at same school, special teachers/instructors who made an impact


Photography/Images


Take photographs often at family gatherings, on vacation, and during important events you have attended or hosted. Collect group photos at work, and Halloween photos of kids or adults in costume, but be consistent in identifying all media records and storing them in albums, on flash drives, or memory cards. Don’t wait to do this, as the memory (yours) will fade with time. It gives children a sense of history to see how they have grown or which relative they resemble. Online storage isn’t covered in this post, as it serves a more immediate purpose and will change as technology evolves.



Antiques/collectibles


Baby books, wedding albums, needlework birth announcements, memory quilts, and provenance for antique furniture are all forms of collectibles and part of your life. Some have a story behind their acquisition, and some tell a story. Documentation of heirlooms, and rare collectibles should be kept in a secure place, itemized with details of value or where they came from. At least if your descendants don’t care for that type of item, they will have an idea of its value if they choose to sell it.


To wrap up. . .


Think of all this collecting and writing as research. It could be great info if someone decides to write a memoir. Ask those questions - why, when, where and how - while you still have a source to talk to. Sort those photos, and take notes in a journal just to get the ideas going.

It’s an ongoing task with only one deadline.

****************************************
UPDATE March 8, 2011 International Women's Day:  See post from 2009, Strong Women Role Models. 

************************************

Music for the Soul

(Photo - A well-known Spiral staircase in Paris, France.  By D.G. Hudson)

On author Nathan Bransford’s blog, (Wed. Jan. 19/11), the question of the day was “What is your favourite song of all time?” Most of the readers had difficulty naming just one, perhaps because we attach significance to different songs at different times in our lives. A song is generally accepted as music with lyrics, intended to be vocalized.


Is it the lyrics, the music itself or the mental association which imprints certain songs upon our memories? Each of us has an appreciation for certain types of music, something which is very subjective and unique. Music can bring comfort, it can set the mood of a visual experience, or it can remind us of times past. Live performances reveal some of the power of music, as we are hit by a wall of sound at the rock venues or we watch the intricate playing of the saxophonist at the intimate club.


The theme music that accompanies a great movie, or a live play can imprint our memory much more strongly. Certain musicals used this method to introduce new songs, and set up a ready audience for the subsequent distribution of the same music in a packaged form (published music sheets, early recordings). Laura’s Theme in Dr. Zhivago, or the whistling tune (aka the Colonel Bogey March) from  Bridge Over the River Kwai illustrate how the song can live outside its original purpose.


Driving songs, based on my research, must be played uber-loud so as to get the adrenaline rolling in the listener’s veins. It goes along with the roaring engines, and the smell of exhaust. The male gender seem especially attracted to these types of songs, in many cases linking them to memories of a previously owned vehicle. Think Radar Love by Golden Earring, or Midnight Rider by the Allman Brothers Band, or Autobahn by Kwaftwerk. Remember: using the music as an excuse to speed, or to keep up with the beat is not generally accepted by law, and won’t get you an exemption from receiving a fine or traffic ticket.


Give it some thought. Those favourite songs are usually connected to some favourite time in your past or a major life event. You may have met the band members backstage, or the lyrics meshed with your view of life. Just as photographs remind us of the event in a visual sense, songs bring back memories in an auditory sense.


The next music event where I’ll have a chance to forge some more memories will be at a local club listening to live jazz. Just music. Not songs this time.