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Do We Really Have the Choices We Think We Have?

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A number of recent factors have led me to think long & hard about end of life decisions & procedures.
One of these factors was the recent death of my hubby’s godmother & second mother on Nov. 1. She was 90 years old, had dislocated her shoulder & broken 3 ribs without falling & was in a great deal of pain. The broken ribs caused internal bleeding & because she was on a blood thinner, she nearly bled out. She emphatically stated she did not want any life saving measures, she wanted to die. Even though she was counselled she may suffer a heart attack or stroke if she stopped taking her blood thinners, she chose to stop taking them.  She was offered blood transfusions at least twice & refused each time despite her hemoglobin being so low she was having difficulty breathing. The only thing she asked was not to have pain. The hospital kept her on a scheduled pain killer routine as part of what they called “comfort care.” There were times when she suffered before she was due another pain killer. She had a heart attack & slipped into a light coma a couple days before she died.  From the time the hospital advised her daughters to gather the family because death was imminent to her actual passing was a little over 2 weeks.  Although everyone was exhausted (including the patient), she was attended by a family member at all times.

Approximately 11 months ago I was diagnosed with COPD which is a progressive, terminal lung disease.  However well I feel right now is the best I will ever feel again during my lifetime.  My lungs will continue to deteriorate for as long as I live.  No one can give me a time line for my illness because every person is different.  If I can keep myself reasonably healthy by not getting any colds, flu or pneumonia I may be one of the lucky ones who lives for years with this disease.  If I do not stay healthy, any illness could dramatically shorten my life.  Being breathless or short of breath & struggling to cough up mucous is a horrible feeling & I live with this to some extent every day.  Basic chores like having a shower, doing a couple loads of laundry or trying to dry mop the floor can be so exhausting  I have to spend a lot of time resting.  A lot of people with this disease suffer from depression & anxiety disorders – I had them before I got sick.  When I think of what my future may bring – oxygen tanks, hospitalizations, respirators & more, I am not comforted by the prospect of what I may have to face before death takes me.  I am not encouraged by what hubby’s godmother just went through.  I had hoped there would be some system in place whereby you could get extra painkillers so you could just quietly pass on in your sleep.

Many of you probably recall reading about a fellow blogger named Bill Hamilton who became a mentor & friend to me.  He had COPD & wrote a blog about it called Dealing with COPD.  For the last few months of his life Bill was in Hospice Care in his own home in Florida & like every other aspect of his life with COPD he wrote extensively about his experiences.  In my opinion he was quite pleased with their care.  Bill died at the beginning of September & was blogging until the day before he died.

Brittany Maynard, a 29 year old young woman with terminal brain cancer took steps to ensure she would be able to choose her own time of death & how much suffering she would endure.  It involved her moving from California to Oregon where it is legal for a doctor to prescribe medication to assist a dying person to commit suicide.  Please read more about Brittany here:  http://www.msn.com/en-ca/news/world/brittany-maynard-29-year-old-right-to-die-advocate-ends-her-life/ar-BBcETNA

I admire Brittany for taking the steps she needed in order to live her life the way she wanted.  Obviously I need to do more research about what is available here in Alberta, Canada in the way of “end of life” care.  I would hope there is some type of hospice care here like what Bill experienced or maybe I need to consider a move to Oregon or Washington.  I’ll let you know what I find out.

Benzeknees – Professional Patient! Part 2

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credit:  Online Stock Photos

credit: Online Stock Photos

This is a continuation from yesterday’s blog post.

After finishing our lunch, we headed to the Royal Alex Hospital (a very big hospital taking up a number of city blocks).  Luckily for me I have a Disabled Parking Pass, due to my difficulty with walking & we were able to park on a level which led right into the floor where the Respiratory Clinic is situated.  Unfortunately, this particular clinic is down a long hallway, turn left down a short hallway, turn right & walk down another very long hallway.  By the time we reached the clinic I was huffing & puffing so bad I didn’t need to ring the bell for service they could hear me trying to catch my breath.

Hubby was quite perturbed about the location & went in search of a wheelchair to help me get back to the vehicle when my test was done.  He was gone for a very long time!  I was taken into a small room with a row of chairs set up for blood draws.  A very nice lady then inserted a needle right into the pulse point of my right wrist.  I will not tell a lie – this hurts!!!  Even though the lady was very good at her job (I have had this test done before where the person missed the pulse & had to dig around in my wrist with the needle to find it).  Thankfully, it only takes a minute once the needle is in & you’re done!

I went out to the waiting room to wait for hubby to return.  He finally showed up with a wheelchair & lots of complaints about everywhere he had to go to try to find the chair.  He wheeled me back to the parking lot entrance & then had to return the chair right away to the place he found it or they would have come searching for him!

By the time I got home Tuesday night, I was absolutely exhausted!

Wednesday morning I began to fast for the second half of the MIBI test.  Hubby once again drove me after he saw how exhausted I was from the first go round.  I was told I would need to eat right after the test, so while I went in to the clinic, hubby went in search of a Subway restaurant (which is surprisingly difficult to find in downtown Edmonton).  Hubby had a staff meeting that evening over dinner time, so I wanted half the sub for lunch & the other half for my dinner.

  • When I arrived I was told to wait in a waiting room which was full of people, all of them there for the second half of the MIBI test.  
  • People were called in one by one to have an injection of radioactive material & then sent back to the same waiting room to wait for 45 mins.  
  • Once you have your injection (just straight in your arm this time – no IV), they want you to eat right away!  But they didn’t explain this properly when they gave instructions, so hubby was still out searching for my lunch.  
  • I was given another cup of Ensure (yuck) to drink.
  • Because I had been shuffled around a lot the day before I didn’t bring a book to read, so completely out of character for me, I joined in the group discussion going on in the waiting room about news events, health issues, etc.
  • One by one we were all called to move into a different waiting room closer to the scanning room where we all met up again.  The second waiting room was much more sedate because there were other people there who looked worried about their upcoming tests(?)
  • I was the last of our group to be called in because I needed to use the chair & the others could use the regular tubular machine.
  • It took even longer the second day to get me positioned the same way as the day before & more pillows were used to jam me into place
  • This time I only needed to have the sitting up scan done for about 7 mins. & I was done for the day.  I met hubby in the waiting room where he had my Subway lunch.  We took it home & I ate it for dinner while he went back to work for his staff meeting.

On Thursday I felt like I had been hit by a truck.  I was aching in places I had never ached before.  I was tired & listless.  

June has been a very tough month for me.  I have had doctor’s appts. at least once a week & sometimes multiple doctor’s appts. every week.  My Outlook calendar is full of appointments!   And July looks to be shaping up the same way.

I have a number of other assessment to complete yet.  I have to be assessed for in-home oxygen, for changes to my anxiety & depression meds, for pulmonary rehab, in addition to regular check ups.  I have to continue to work on my disability claims with both the provincial & federal governments.

Maybe now you can understand why I call myself a professional patient? 🙂

 

Are You Where You Thought You Would Be?

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credit:  online stock photos

credit: online stock photos

This post is inspired by Life in the Boomer Lane’s post on Guerilla Aging http://lifeintheboomerlane.com/2014/03/21/guerrilla-aging-when-where-we-are-isnt-where-we-thought-wed-be/

I am afraid to say my life isn’t what I thought it would be. As part of the boomer generation, I was very much into the hippie movement.

I have always been very independent.  Up until I became pregnant with my daughter, I thought I would be a career woman & never have any children at all.  I had been steadily climbing the rungs of the ladder to that goal (unaware I would have hit a glass ceiling at the time).  I started working my very first job just weeks after my 16th birthday & I worked all of my life up until August, 2012.

In August, 2012 I had been struggling with some health issues (severe incontinence associated with a very difficult hysterectomy, explosive diarrhea associated with gallbladder removal, shortness of breath) & then I injured my left knee. No one had a definitive answer for why I couldn’t bear weight on my left leg anymore (I woke up with it), but I was assured it was “just a sprain.” Except it didn’t get any better. I used a cane, but still had a great deal of difficulty getting around & the pain was not letting up.  I went to the emergency room to try to get some help & was told I was aggravating the “sprain” & was now experiencing micro-tears in the ligaments of my left knee.  I was put on crutches so I would do no weight-bearing at all.   In the meantime I continued to try working.  When my assignment ended I wasn’t in any hurry to take on a new assignment because hubby & I were in the middle of moving from the south end of the city to the northeast end of the city.  I wanted to take some time to get settled in our new place before going back to work.  Except when I tried to go back to work, there was no work for me – I had received an uncomplimentary performance review which referred to my knee injury being part of the reason my performance was not satisfactory.

I had just finished back to back assignments where I was replacing people who had just walked off the job in the middle of their shifts, so I guess I should have been better prepared when both assignments gave poor performance reviews for me.  But I had such an exemplary performance record up to this point, I was totally floored by what happened!  I was 56 years old & I was out of work & not in the best of health.  Although I made a good faith effort to find work, I had no luck whatsoever.  Every job interview for jobs I did not get pushed me further & further into depression.  By the time my employment insurance benefits ran out I was so depressed I could barely get out of bed.

I am still suffering with severe knee pain, severe incontinence, my respite from back pain (born with spina bifida) seems to have ended & I  have recently been diagnosed with COPD for which there is no cure.  My health will only continue to deteriorate.  I was lucky enough to find a medication to help with the explosive diarrhea.

I am fighting with the government to get disability benefits which is mind-numbingly debilitating.  I have had no income for well over a year.  I now rely totally on my husband for support who is fighting his own battle with unemployment.  Who wants to hire someone who is so obviously close to retiring?  (Sorry hubby, but you do look your age)  This is hard for me to do.  I have always had my own income & even if it was low income, I was always able to contribute to looking after the household.  Due to back pain, knee pain & shortness of breath, it is difficult to help with any household chores.

Why is it when you need help due to disability, the government puts so many roadblocks in your way to keep you from getting the help you need.  You’re sick, but expected to jump through hoops, when walking is difficult enough.  You’re already dealing with the loss of ability (& possibly your approaching demise) & the depression which accompanies it, then the government adds to your depression by making it all so difficult for you.  A blogging buddy has said the government does this to you because they hope you will be too sick to keep up the fight, so they won’t have to pay out the benefits you have paid into your whole life.

credit:  online stock photos

credit: online stock photos

I thought these years would look much more like the picture on the left.  My husband should be retiring in May of 2015,  but it’s not going to happen.  Like he says, he will probably have to work “until he drops dead.”  His unemployment benefits run out in another couple months.  Our retirement savings are slowly dwindling as we have to use them to supplement our income right now.  We have pared down our expenses & soon may have to make some tough choices about changing our frugal lifestyle even more.

This is not how I thought I would be spending my remaining years.

Bleary Eyed Monday

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Credit:  Microsoft Clip Art

Credit: Microsoft Clip Art

So here I sit in front of my laptop, bleary eyed from lack of sleep on a Monday morning.  As usual insomnia has played havoc with my sleeping patterns again, so I didn’t fall asleep until about 4 a.m.  The grass cutters started at 7:19 a.m., with the mowers going back & forth in our little bit of grass property & the property next door, followed by the trimmers with their weird buzzing sound.   But believe it or not, I was awake before they started!

My plan was to get up early this morning & tackle my mountain of email notifications.  When I opened my Inbox this morning, I had 327 unread messages!  98% of these are blog notifications from all my blogging buddies out there who haven’t been in a funk, so they’ve been writing their fingers to the bone even though I couldn’t motivate myself to read anything.  But did they stop & wait for me?  NO!

So this morning I have turned off the TV, the radio, my cellphone & any other distractions & devoted myself for the last 2 1/2 hours to simply reading blog posts from my friends.  I’ve managed to trim my Inbox down from 327 to 238.  I still have a looooooong way to go!

What do you do if you get behind?  Do you try to get caught up?  Or do you delete a lot of posts so you can catch up?

Adventures in Panic Attacks

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ScreamingI have been suffering from Panic Disorder & Anxiety Disorder for over 30 years now. During this time I have met & talked to many other people who suffer from this disabling illness.  There is almost always a cry for help – help me cope with these horrible feelings going on in my body, the horrible thoughts going through my mind.  This is taking over my life & I need help.  Many, many times I have offered suggestions that have worked for me, but it is usually a one-on-one experience & so I am only helping one person at a time.  Maybe by writing about my experience with this, I can help more people.

I grew up in a physically abusive home, so I have lived in fear for as long as I can remember.  Early in my 20’s I started experiencing panic attacks along with intermittent depression.  I had no idea what was happening to me & so I sought medical help where I immediately was put on tranquilizers.  I may have received some counselling.  I went through cycles of this for the next 15 years or so.  At that time I developed chronic depression complicated by severe panic attacks (up to 20/day) & generally I could barely cope with living at all.  So basically my life fell apart.  I was prescribed tranquilizers, mood stabilizers & anti-depressants & roped into intensive counselling.

One of the things I found was that the combination of medication & counselling was not working all that well for me at first & I was worn right out from surviving the panic attacks.  On my own, I contacted a hypnotherapist to see if I could get some extra help.  I was suffering so many panic attacks every day, for the 20 minutes or so I was under hypnosis, it was the only time I was getting some relief from my symptoms.  I learned a lot from the hypnotherapist & hopefully I can pass on some of this knowledge to you.

In a nutshell, panic attacks or anxiety attacks are the body’s fight or flight reflex kicking in.  For some people panic attacks can be symptoms of PTSD from previous trauma.  Your body is reacting to some stressor by dumping a whole lot of adrenaline into your system so if you needed to you could fight off or escape an attacker.  If you don’t need to escape an attacker, then you are left with a rapidly beating heart, a tight chest & a whole host of other rather uncomfortable symptoms all making you feel like you’re about to die!  Often you have no idea what the stressor that caused the attack was because the panic attack happens after a period of stress (at least for me).  Often panic attacks seem to come out of the blue & for no good reason.  This is part of what makes them so difficult to deal with because there is no warning.  One minute you are going about your business & the next you feel like you’re going to die.

There are many medications that can help you cope with panic attacks, but it is often a trial & error process to find the meds that work properly for your body.  What might work for me will result in no help at all for another.  Panic attacks can be accompanied by depression as the person tries to cope with the extraordinary changes going on in their body as well as in how they interact with their world.  Usually after your first panic attack, you never again feel safe to do whatever it was you were doing when you had your panic attack.  As you experience more panic attacks the things you feel comfortable doing become less & less.

But medication is only one way of coping with panic attacks.  Through long years of coping with them I have come up with some mechanisms of my own:

  1. The most important one is to realize panic attacks only last 20 minutes or so if you DO NOT FIGHT them. If you fight the attack it will last a lot longer, maybe 45 minutes to an hour.  At one time I was having rolling panic attacks for days on end (one attack after another without much break between) so it was important to get this through my head.  This was the one piece of information which most helped me because once I understood this, I could cope better during the attack, knowing there was an end in sight.
  2. During a panic attack your body dumps a lot of adrenaline into your system. It sometimes seems as if staying still would be the best way to cope, but I have found if I get up & do some pacing while in the middle of a panic attack, it helps to dissipate the adrenaline.
  3. As soon as I feel a panic attack coming on, I start talking to myself, “This is only a panic attack, you are not going to die. If you go with the flow it will be over in 20 minutes. Just do a little walking & some deep breathing.” Repeat over & over until the panic attack is over.
  4. Practice deep breathing to avoid hyperventilation.  I used to use a brown paper bag to breathe into, but they discourage this practice now.
  5. Do not project into the future or dwell on the past – try as much as possible to stay in the moment.  If you start worrying about what may happen in the future or dwell on what has happened in the past, you are inviting more stress into your body.  You want to relieve as much stress as possible.  While talking to yourself & deep breathing, look around the room.  Is there wallpaper?  What do you think of the pattern?  Look at the petals of a flower if there is one in the room.  Don’t concentrate on dust or worry about your housekeeping, take in small details you don’t ordinarily notice to keep yourself in the moment.
  6. When the attack is finishing, try relaxation techniques, like relaxing your toes, then your calves & work your way up to your head or start at your head & work your way down. Whichever works best for you. It helps sometimes if you imagine yourself in a serene place of your own choosing. My place is under a palm tree on a white sugar sand beach with turquoise water. A gentle breeze is blowing so I don’t get too hot, but the sand is warm & I burrow my body into the sand & close my eyes to have a nap.
  7. Give your body a break & if you can take a nap after your attack to allow your body to return to normal.

All of these techniques can help you ride the wave of a panic attack or multiple attacks.  However, I urge you to seek medical advice & the help of a good therapist.  My techniques are not meant to take the place of good medical care, merely some tricks I have found helpful in my past.

(pic courtesy of Microsoft clip arts)

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There are those of us who suffer in silence, never talking to anyone about the loneliness & lack of self-esteem caused by our childhoods. I only wish I could have put this into words this brilliantly.

that precarious gait

There is a very dark place inside some of us.  I think of it as the “not enough” place.  It is a space in our psyche in which we are consistently less than adequate, always falling short of expectations, never quite good enough for the task or person we are striving toward.   This place has no light.  It is heavy, pregnant with expectations never met, people never pleased and ideals fallen away.

For some people, this place was constructed early, as part of some childhood experience — an emotionally distant or highly-critical parent, physical abandonment, or unstable family dynamics.  For others, it appeared suddenly, maybe even overnight, the result of an intensely traumatic experience that shattered their sense of personal safety and value.  Whatever the cause of its appearance, once present it is a difficult place to dismantle.

The not enough place is where all our worst personal demons are…

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Please consider joining Team Lizzie if you can & help bring awareness to these conditions which still have such a stigma attached to them. I am no longer afraid to say I am chronically depressed & suffer from Panic Disorder.

Running Naked With Scissors

coffee talk, happy spot, coffee and donut

Well we haven’t done this in a while have we?  I thought it would be fun to roll out the good old Happy Talk.  From the Coffee Spot of course.  The best coffee and donuts around.  The donuts are zero calorie light as air and they all have extra sprinkles.  I figured I might as well negotiate a deal since my butt was getting big from all the donuts I ate here.

Also – it’s my 300th Post here on Word Press – are you supposed to mark that one?  Well I never remarked on the first two hundred.

So does anybody know what is special and cool about this week October 7 – 13 of 2012?  Do ya?  Huh?  

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Why Do They Call It the Blues?

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Does anyone know why when we feel sad, they say we have the blues?  Or we’re in a blue funk?  What about the baby blues (euphemism for post-partum depression)?  What has the color blue have to do with being sad?  And who came up with this in the first place?  What did that person have against the color blue?

I’ve always thought of blue as a cool color, refreshing (like the Caribbean Ocean), relaxing – but never as sad.  To me a sad color would be brown.  Besides being the color of chocolate (& I love me some chocolate) what has brown got to recommend it? Or maybe black is the sad color?  Although this may have been overdone during the Goth era & so people hesitate to use it to express sadness anymore.

But it seems blue is the accepted color – there are hundreds of references to blue in our culture like the Elvis Presley song Blue Christmas.  Even Elton John doesn’t seem to know the answer (& I thought Elton John knew everything):

“And I guess that’s why they call it the blues
Time on my hands could be time spent with you
Laughing like children, living like lovers
Rolling like thunder under the covers
And I guess that’s why they call it the blues”

Well, whatever the reason, I have been in a “blue funk” for a little while.  Nothing terribly serious, just some work issues, making me feel out of sorts.  So if you’ve been following me, you may have noticed I have been absent for a bit. Hopefully, this is behind me now & we can all get back to our regularly scheduled programming.

But I still want to know why blue?

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