Saturday, 29 September 2012

My Experience With Canadian Health Care

                                                                     My Alien Pen                                        

A few weeks ago I was asked to be a guest on the #hchlitss tweetchat that occurred on Thursday September 27, 2012.  The topic was Chronic Illness and the Canadian Healthcare System.  It was a new experience for me - That's why I added a picture of this alien.  You may still be able to read the transcript here 
And here is the story I told of my life from a Canadian healthcare  point of view. Luckily not exciting, but it may have interest as a contrast.  I will answer any questions in the comments.

Before I was 20 healthcare was the farthest thing from my mind.  We were all very healthy and went to the Dr for checkups now and then.

Once I was married children came into our lives pretty easily.  Thank goodness we did not have to budget for doctor visits and delivery.  At that period of life we were just starting out and had very little money.

Years passed and I had to have a biopsy for suspected cancer. The biopsy was the treatment so another hurdle passed. Around that period 1 kid broke his arm twice.  We did have to pay for the cast.  It wasn't covered.

Then, before our kids were teens, I became sick and did not know what was wrong.  Unfortunately the doctors I saw did not know either.  Finally I got a diagnosis from an orthopedic surgeon - it was Rheumatoid Arthritis.  That's where the blog post titled "Things Were Different Then"  fits in to this story.  Since I was admitted to the hospital my drugs were covered at the start.

In our system only drugs adminstered in hospitals are covered unless you are 65 years old or above.  If you can't afford your prescriptions help is available from the Trillium fund which is based on a means test.

Since that diagnosis 30 years ago I have been cared for very well by all of the Health Care Practitioners I see.  I have had terrific rheumatologists. I would estimate 60 rheumatology visits over the years.  For a while I was seeing my GP every week for an injection.  Thank goodness I finally found  out I could do it myself.

I had 4 foot operations and a gall bladder removal, all at no cost beyond my taxes of course.  For massage and physio I have to pay; likewise if I wanted botox to look better it would come from my own pocket.

My husband has a job with health care benefits that covers items outside of the government health plan.  That covered the prescriptions and some dental care and a portion of eyeglasses, as well as some of the cost of orthotics.

So as is the case with everyone who has chronic illness it has been a struggle dealing with RA but it has helped a HUGE amount that we are not dealing with large medical bills every time we turn around.  And there are lots of expenses for over the counter medication and 10% copay on the drugs. 

If we have enough medical expenses they can be used as a deduction when we file our income tax returns.  So my teenage self, who read Ayn Rand and thought people should save up and cover their own ailments, was woefully uninformed about the realities of life.  I can see that now and not just because it has benefited me. 

I have often complained that things move slowly in RA but on the plus side that has let me plan ahead for surgeries that may have wait times. Everything has been within acceptable time frames  except for the diagnosis.  That was crucial but not the fault of the system.

Victory gums are liqorice. Too bad they don't conquer illness

Overall 30 years of chronic illness and still going strong!!

Monday, 24 September 2012

Chronic Illness: A Heavy Burden

                                                              This is the Heavy Lady

She's a doorstop made of iron and she's amazingly heavy to pick up.  As someone who has been in the family a long time we would not part with her though she needs a touch up here and there. (Just like me) 

For some reason the term "heavy lady" makes me think of living with RA.  That may seem like a leap, but it takes a lot of time and energy to take care of chronic illness. And to look at most of us it is impossible to tell we have a health issue. In a sense it's like carrying the weight of a health problem that would surprise others with the complexity.

So we have to shed the weight.  Not the time and trouble it takes to manage it, but the heaviness of spirit that it casts on us.  I've been collecting advice about this.  I am sure it can help a little.  And I see that people with RA blogging and on Twitter cope amazingly well.

Marianna's blog suggested that as Tip #363 we balance every negative with at least 2 positives.  So she told people to look at the Awesome Blog by Neil Pasricha  and a blog called This Gives Me Hope.  She did say more than that and with more elegance on her post here

And I went to a great family reunion yesterday and learned a lesson from a little boy.  He was sitting out on the porch at a kid sized table with his boots off and his little sock feet were just waving up and down with delight.  He was so comfortable and happy eating his pie and I think that it was the main thought in his mind.  I would like to be as single minded in my enjoyment of everyday pleasures.

This guy is 50 years old

There is something to be said for smiling and this guy inspires me to smile.  He's a pepper and my mom won him years ago in a contest.  Well worth saving I say even as I approach the downsizing years.

I have another longer story of how an accidental pursuit helped me get over the depression I had after my diagnosis.  It will come soon.

Saturday, 15 September 2012

Identity and Work (Permanent labor force non-participation)

When I was diagnosed with RA I was working part time in a bank as a customer service representative.  The friendships I had with people over many years and with fellow workers were important, but fatigue and painful feet made it difficult to carry on as the RA progressed.  It was a gradual change but continuous and unwelcome.

        (A TD Bank in New York. Surprised to see familiar company elsewhere)

I started working part time in market research at that point and found that sitting down talking on the phone was far more possible for me.  When the company owner found true love (and busted up two marriages in the process) two of us there decided that we could do the job so we made a deal to buy the company. 

It is so much easier to be the boss.  Management accommodates your every need.  I had a great collection of suns and garage sale art in our office and really enjoyed talking to our clients and solving their problems. There was some friction.  My partner at one point said that if she had known the extent to which RA would affect me she never would have gone ahead with the partnership.

                                                                   The sun wall

However all good things come to an end. Our company was purchased; then my contract ended.  Suddenly I had no authority, no employees and a basement full of pictures.  After 20 years of working with no end in sight the sidewalk suddenly ended.

And as you all know working with RA takes quite a toll. When you're doing a demanding job with a chronic illness many find that working is pretty well all that you can manage to do.  We go home and rest after every day and then try to squeeze the rest of our lives into the weekend.  Something has to give and it is often social life, family responsibilities and creative lives that atrophy. 

I have said on occasion that I feel as though my life could be represented by a bonsai tree. It's lovely to look at bonsai but it represents a deliberate stunting and pruning of the tree, both the roots and branches.

This change in life, from working to not working, is tied up in our identities and the way we see ourselves.  As hard as it is to keep working, it's even harder to stop. 

Have any of you found good ways to deal with the new horizon of not working? 

So far I am consoling myself with a rich new group of virtual friends and news from the old office is like dispatches from a war zone. 

Maybe it's time to have fun and play with grandchildren...

Or my "art"... 

This is from the blog post called "I Never Met a Couch Potato with RA"

Saturday, 8 September 2012

Ideas to Spare Your Hand Joints - You'll Need Them For a Long Time

Here are a few things I use to save the joints of my hands and fingers.    I also have a collection of things that might help some day and others items that are useless and rather silly.

I collect water bottles that are easy to hold and easy to pick up without looking while I am driving. This was one of my best finds though ecologically bad. Here I am in Canada and we are shipping this water in from Ireland. It amazes me that any company would find that economically feasible. But it's good for me - all of those indentations give me a good grip. And also I am far less likely to drop it. Now if only the lids didn't keep rolling under the car seats...

I have actually worn one of these out since I first got diagnosed. I almost feel that I can open anything with it. For pop bottles, pickles (lie -I never open pickles) fruit juice and everything else I use this as an opener. This jar opener even works to pry up the vacuum sealed lids on mason jars of soup.

This is just a plastic sleeve that I have heard called a nobby.  It makes setting the dryer a lot easier.
Sometimes you don't realize how much strain you are putting on your joints until you make it easier.  These can be used on any knob or dial.  They are a little stretchy but you might need help to put them on the knob the first time.

Turning keys in a regular lock can be tough when your hands are sore and weak. Opening my front door has always been a problem for me.  I used to use the metal split ring on my keyring but it is MUCH easier using this keyturner.  I even bought another to use for the washroom door at my office.

If you would like to see more tips Auntie Stress has been posting 1 per day for the last 355 days.  What a lot of work that has been Marianna!

Wednesday, 5 September 2012

Rheumatoid Arthritis and Intimacy

In chronic disease when you think of intimacy or sex  there is always the question - Is it me or is it my health?  I never thought it was the rheumatoid arthritis, but with all of that pain and fatigue having a sex life was the last thing on my mind when I first became ill.  It used to be so painful when any part of me was bumped by accident that I would build a little barrier between me and my husband to protect my hands and feet. That is the most unromantic thing I expect I'll ever say in public.

As the years have passed I have resorted to all kinds of methods to wake up in the morning in better shape.  This now includes resting splints on my hands, another splint to keep one foot from moving in a painful way at night and a neck support collar which has helped with neck and shoulder pain.  But the upshot is not too pretty.  Add that to a strong desire for comfort and enjoying a duvet as my only cover because of the weight and awkwardness of covers and I am sure I seem antisocial as well as unromantic. I certainly don't look cool and beautiful in my own mind.

Depression is also an issue for some at any point in the road you take with chronic illness. That also puts a damper on things

Lately I found a study on PubMed.  This one is called "Evaluation of Sexual Dysfunction in Women With Rheumatoid Arthritis: A Controlled Study".   Sorry RA Guy and other men - I am sure this problem is not confined to women with RA but the authors did not study you.   Here's the link and another about Sexual Function in Women With Chronic Illness and Cancer

Are you surprised to hear that active RA has a measurable effect on your sexual function? I guess the answer is to get healthy overall to counteract this gap that can develop in our lives but there are not many solid ideas out there to help in this area. Maybe it seems to be a lesser issue with all the health worries that come with chronic disease. 

At the Sjogren's Conference this year there will be a speaker who will address this topic at the request of the members. It's a vital area in our lives but there is a real lack of advice.

When we're over 64 we'll still be together

The song below always makes me laugh because I can identify with it, with all of my occupational therapy help in the night.

Here's a song for all of the people out there sleeping with OT aids and CPAPs, along with their partners.

After the ball was over
Katie took out her glass eye
Took out her teeth to wash them
Hung up her hair to dry
Threw her peg leg in the corner
Hung her wax ear on the wall
You'd never recognize Katie 
After the ball.