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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.

Oh Happy Day!

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Courtesy Online Stock Photos

Courtesy Online Stock Photos

Oh Happy Day . . . ! I couldn’t wait to share the news with my bloggy friends! While I was in the clinic having a shot in my knee this morning the federal government called to say I have finally been approved for Disability payments! Woohoo!
It only took almost 10 months, numerous doctor visits, multiple forms filled out, several letters, me showing up on their doorstep & questioning them to finally get an approval! I won’t get any money for 3 – 4 months & I don’t know how much I will be getting, but I’ll get something! It will be a big help paying for the extra meds I need now for my COPD!  I had to quit physio yesterday because we don’t have any benefits yet from Kelvin’s job & without me having an income, we simply couldn’t afford it.
I am chair dancing with joy! ( \ ) ( l ) ( / )
Thank you to so many of you for keeping positive thoughts coming my way, your positive thoughts had an effect I’m sure!

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.

Part of My Journey in Lung Disease

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Woman with Mask for OxygenI have spent a lot of time in hospitals because I have had so much surgery over my life, but never a lot of  time all at once.  I have recently been diagnosed with COPD & I am trying to deal with this diagnosis.  This post was inspired by Bill Hamilton’s post where he describes a long stay in the hospital in HIS journey with COPD.  See it herehttp://dealingwithcopd.wordpress.com/2014/01/25/postscript-to-how-i-feel-the-week-ending-012414-living-with-copd/#respond
I can relate to his situation when I got my pleural effusion, even though my situation was not nearly as severe as his was. I lived in the bush, 4 hours drive away from the closest hospital. I presented to the doctor in my little community with chest pains in my upper right back. I felt clammy, short of breath & unwell – I thought I was having a heart attack. The doctor was unsure what was wrong with me, so he sent me by air ambulance to the closest hospital (40 mins. flight). I am afraid of flying! As soon as they put my stretcher on the small plane, my heart rate skyrocketed & they had to give me a sedative. I arrived at the hospital, they did the bloodwork & other tests to determine I wasn’t having a heart attack & discharged me, even though I still felt crappy. I had to find my own way to a motel in the community & wait till the next day when my husband could drive down to pick me up.

I still felt crappy for a about 4 days, then I developed a fever & even more difficulty breathing. I presented to the doctor who now recognized I was in real trouble. Please don’t misunderstand – this was a very caring & knowledgeable doctor – but over the years I have recognized my body does not present with “the usual symptoms.”  When I had gall bladder problems I presented with the symptoms of appendicitis, when I have stomach problems I present with pain under my left breast.

Another air ambulance was summoned, but because of my fear of flying I was heavily sedated this time. I don’t remember the flight, the x-rays or examinations. I woke up in a hospital bed on oxygen, the next day. I had severe pneumonia with a large pleural effusion. I spent a week in the hospital on heavy duty antibiotics & enforced rest before they discharged me back to my small town. When my hubby heard they were flying me out again, he thoughtfully went back home & got me a book so at least I could read because there was no TV in the room.

A week later hubby & I had to drive the 4 hours back to the hospital so I could be examined again. My breathing was still labored. After x-rays it was determined the effusion had not re-absorbed into my body. I was given the choice of going home for another week on antibiotics & being re-evaluated again or having the effusion drained off. While hubby & the doctor debated what to do I sat there, afraid & struggling with my breathing.  When someone finally asked my opinion, I said I didn’t want to go back home with the breathing problems I was already experiencing, let’s treat this now.

The 2 hospitals in this community were merging into one at the time, so some supplies were missing.  The doctor had to jerry-rig with a long needle inserted into my back, he would fill up the syringe then pour off the liquid into a little beaker before drawing off more fluid.  I had to sit perfectly still the whole time this was happening & the whole thing took about 25 minutes to complete.  Once the fluid was off my back my breathing improved right away.

I had been diagnosed with pneumonia before & even had “walking pneumonia.”  When I woke up in the hospital the day after my admittance, the doctor told me I had “laying in the hospital, on oxygen & enforced rest for a whole lot of time” pneumonia.  This was my first indication of what was to come.

By the way, this is my 300th post!

Spina Bifida Awareness Month

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October is Spina Bifida Awareness Month.

What is Spina Bifida?
Spina Bifida happens when the spine of a baby in the womb does not close all of the way.  It occurs within the first month of pregnancy — often before most women even know that they are going to have a baby.  Every day, about eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine. Spina Bifida is the most common permanently disabling birth defect that is compatible with living into adulthood.

What causes Spina Bifida?
No one knows for sure. Experts think that both genetics (one or more genes) and the person’s environment might interact to cause Spina Bifida. It is possible that a person inherits multiple genes that make them susceptible to having Spina Bifida, but something in the environment triggers the Spina Bifida to develop.

Can Spina Bifida be prevented? 
There is no way to prevent a baby from having a birth defect. It is only possible to reduce the risk. Studies show that the risk is reduced up to 70 percent when women take folic acid before and through the first three months of pregnancy. Folic acid does not stop all cases of Spina Bifida. There is still a chance that some babies will have it even when women take the right amount every day.

Who is at risk for having a baby with Spina Bifida?
Any woman who is capable of becoming pregnant can have a baby with Spina Bifida.  Although people with a first-degree relative (parent, sibling) with Spina Bifida are 5 to 10 times more likely to have Spina Bifida than the greater population, there is no way to tell which women will have babies with Spina Bifida. Ninety-five percent of people with SB have no family history. Many things affect pregnancy, including genes, environment and certain illnesses or drugs. These include:

  • Prior pregnancy with Spina Bifida (the chance of the next pregnancy being affected is 20-50 times greater)
  • Family history of SB
  • Mother with insulin-dependent diabetes
  • Mother’s use of certain anti-seizure drugs
  • Mother with medically diagnosed obesity
  • Race and ethnicity. (SB is more common in Caucasians than African-Americans and more common in Hispanics than non-Hispanics.)

What conditions are associated with Spina Bifida?
Children and young adults with Spina Bifida can have mental and social problems. They also can have problems with walking and getting around or going to the bathroom, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, tendonitis and sexual issues.

Spina Bifida Occulta
It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Spina Bifida Occulta usually does not cause harm, and has no visible signs. The spinal cord and nerves are usually fine. People find out they have it after having an X-ray of their back. It is considered an incidental finding because the X-Ray is normally done for other reasons. However, in a small group of people with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon.

Spinal Cord Tethering
A common cause of deterioration in Spina Bifida

What is spinal cord tethering?
Tethering of the spinal cord is a condition in which the spinal cord becomes attached to the spinal column via surrounding structures. Normally, the spinal cord hangs loose in the canal, freely moving up and down with growth, bending and stretching. A tethered cord does not move. It is pulled tightly at the end, reducing blood flow to spinal nerves and causing damage to the spinal cord from both the stretching and the decreased blood supply.

How does tethering occur in milder forms of Spina Bifida?
Tethering, usually in adults with milder forms of SB may be related to the degree of strain placed on the spinal cord over time, and may be significantly worsened during physical activity, injury, or pregnancy. It may also be caused by narrowing of the spinal column (stenosis) or bony spurs.

A tethered cord may go undiagnosed until adulthood.  Delayed presentation of symptoms can be insidious, meaning that symptoms come on slowly over time, but can be complex and severe. Back pain, brought on or worsened by activity and relieved with rest, can be a sign of tethering. Sometimes back pain is also associated with leg pain, even in areas that have decreased or no sensation. Changes in leg strength, deterioration in gait (walking), progressive or repeated muscle contractures, orthopedic deformities of the legs, scoliosis, and changes in bowel or bladder function may be signs of tethering.

All of these facts came from the website of the Spina Bifida Association.  If you would like to learn more please go here.

I was born with Spina Bifida.  I had an acquaintance die from complications of Spina Bifida.  I have a mild form of this birth defect, but some people are severely crippled with it.  It would be a good thing if more people (especially women of child bearing years) were aware of Spina Bifida so they could take steps such as taking folic acid before & during pregnancy to prevent more children born with this birth deftect.

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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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Spina Bifida Occulta

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(both pics courtesy of Wikipedia – Spinda Bifida)  These x-rays show what mild deformities caused by Spina Bifida Occulta look like.  If you would like to learn more about Spina Bifida Occulta.

I was born with Spina Bifida Occulta affecting 4 vertebrae in my lumbar/sacral region.  I have had back problems all my life, but of course since I was a child & teenager, no one believed me when I complained of back ache.  By the time I was in my early 20’s I had spent numerous occasions flat on my back suffering with back pain.  By the time I was 25 I had osteoarthritis in my back & it was when they were trying to diagnose the arthritis I found out I was born with a birth defect.

I was also born with a partially club foot (my foot was turned in & the toes of my left foot curled on top of each other) which is another symptom of Spina Bifida, but no one knew it at the time.  I have not been left with any permanent noticeable deformity from my foot since my toes were individually taped & then taped across with a splint.  Every time my mother changed my diaper or fed me, she was instructed to remove the splint & massage my toes to help them move back into a more normal position.  I had special shoes & had to wear them every moment I was awake until I was about 2 years old.  To this day, if I’m driving a standard vehicle & have to do a lot of clutching (in heavy traffic), it feels like I’m stepping on shards of glass.  But other than that I don’t really suffer with my foot.

But I do still suffer with my back.  Arthritis which set into the defective vertebrae right away & then spread throughout the rest of my spine, my neck, my hips, knees, toes, wrists & fingers is my constant companion.  I did receive some relief for 20 years when a sports doctor put me on a course of steroids for 6 weeks (which is another whole blog topic).  I am extremely grateful for those years & sad now the symptoms are returning.  Between my knee injury a couple months ago & the return of arthritis symptoms I am now using a cane again for walking.

I knew a fellow named Garry in grade school.  He was not my friend – his father was the principal of our school & he didn’t have many friends.  I felt especially bad about that when I heard he died in his mid twenties from complications of Spina Bifida.  Like me, he showed no outer symptoms of this birth defect.

When I was doing the research for this piece I discovered Spina Bifida can also have an effect on your bladder & bowels.  I have an appointment next month with a urologist for bladder problems, maybe this is something I should be mentioning.  I thought my problems stemmed from my hysterectomy 7 years ago, but maybe not.  I guess I will find out next month.

Did You Ever Wonder?

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Did you ever wonder about this exact thing?  All their ads say they are lowering prices every day, but nothing is ever free!

I hate to admit this but every once in while I do shop at Walmart.  As a matter of fact, I recently shopped at Walmart since it’s almost right next door to my new apartment.  When I walked in with my cane & the greeter asked me if I wanted an electric cart, I was quite surprised.  But when I thought about it, I realized it would probably make my shopping experience so much better if I wasn’t limping through the store in slow motion.  Since I have always hated shopping anyway, it has not been such a hardship for me.  Shopping is one of those things it has become more difficult to do & so hubby has been great & does most of the shopping now.  Only problem with hubby doing the shopping is I never get any chocolate treats when he shops alone.  If I want chocolate, I have to go myself.  It’s pretty smart of Walmart, because I was more comfortable, I spent more time in the store & spent more money.  So I’m wondering why more stores don’t follow Walmart’s example?

I hate this is happening to me & now I may be more dependent on aid devices but this may be my lot in life from now on since the pain has moved into my other knee as well.  Because the first sprain won’t heal & I have been limping for so long, now I can feel I have damaged my other knee which of course has ruined the alignment of my spine & now my back hurts as well.  I was nearly crippled badly with arthritis 20 years ago, so I know what the downward spiral feels like & this is what it feels like.  I guess I’m lucky I got an extra 20 years of mobility after a steroid treatment, I was just hoping for a little more since I’m not that old yet.

It’s Official!

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Well, it’s official! A cheque arrived in the mail yesterday from the Workers Compensation Board. The cheque was to pay me for a NELP (Non-Economic Loss Payment). “This benefit is paid to recognize permanent clinical impairment & is paid to an injured worker because the impairment may impact life outside the workplace.  The entire NELP amount is paid in a one-time lump sum.”

So there you go, I’m disabled!  A Crown Corporation has determined this & it’s now official!

Here’s the back story:  On January 30, 2009 I worked for a small town in Alberta.  When I arrived at work that particular morning there was a huge sheet of ice right in front of the entrance to our office.  As soon as I got inside I immediately reported this hazard to Public Works who looked after clearing & sanding the roads & sidewalks in the community.  When I went out a few hours later to deliver some paperwork to our main office, I slipped & fell on this ice.  I put out my right hand to stop my fall & ended up with an expulsion of the triquetrium (fractured wrist/carpal area).  A small piece of the bone snapped off & did not re-attach during healing.  I also had a large contusion on my elbow.   I spent just over 6 weeks in a half cast, followed by 6 weeks in physiotherapy.  On my last day of physiotherapy I lost my job (which is a whole other story).  Workers Compensation paid for all my medical treatment & physiotherapy as well as for the one day of work I missed.

One year later Workers Compensation did a follow-up & it was discovered I had suffered some permanent damage.  I have to use a wrist rest & an ergonomic keyboard for working, along with breaks to change what I’m doing from time to time.  I require help sometimes to open packages.  At home, I have difficulty doing things like opening cans & jars, pulling anything requiring strength, opening packages, doing up my bra, etc.  I had to go through all the rigamarole of new x-rays & seeing a Workers Compensation doctor.

So now I have their decision.  Quite frankly, I had forgotten about it.  In a way, it’s kind of strange to have this label.  I don’t feel any different than I did yesterday.

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Please, if you can, respond to Hobbling Around’s request for more supporters. She’s a good egg & it would be great for her to be able to wear us all on her shirt as she participates in the walk. Just click the link in her post. Have a great day!

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