Rod’s Health Journey

My health journey actually began when I gave myself permission to be vulnerable.

Let me explain. I’ll need to give you a few details for background. I am number 8 of 9 kids, and soon after I was born, we started moving house frequently. I actually moved 16 times before my 15th birthday and had attended 10 different schools.

I was 8 years old before my family had any idea that I was profoundly deaf. I had learned to read emotions as a more reliable mode of conveying information than reading lips and speech. It was my reading lips that alerted my family that I had a “problem”.

When the doctor had a look, he suggested that I had often had earache, that my eardrums were permanently scarred, and that I would never hear any better than I do. The fact is, we were always on the move, always busy. There was no time for me to be sick, no point in complaining about earache, that was just life. I coped. I have no regrets. But I was the child who never complained about anything, who was always easy to deal with. When my mother found pools of pus on my pillow, she asked why I had not told her, “my ears always hurt, Mum.” was the answer I gave her.

I have since grown up. The boy who did not complain became a man who would not. It became increasingly important that I not be seen to be vulnerable in any way. So I became the image of robust good heath, I could eat anything and I could do nearly anything (or so I thought). I was physically active for most of my working life.

That describes much of my first 40 years of life. I had occasional bouts of injury, but they never lasted long.

Then I went to America to marry my wife. At first, I had intended to get my green card and work. When our son made his presence known, I was to be the at-home parent, and later the homeschooling dad. I could live with that.

My wife’s first order of business was to get me to have a sleep test conducted because she was very alarmed that I woke gasping for breath many times each night. (Of course, I had no memory of such things!). I did as she suggested and was very surprised when they put the mask on me at about 4 am. Between 4 and 6 were the best 2 hours sleep I could remember having in at least 10 years! I have used a C-pap ever since then, and do not sleep without it. I was dying, many times per night, and I had no idea! I suddenly went from “invincible” to “vulnerable”. That was my first taste of my own vulnerability, but it would not be my last!

Part of my immigration process was to have a chest ex-ray (which I had never had in my life to that point). The doctor asked me how I felt, and I said something like “Fine until you asked me that!”. It turns out that my chest ex-ray looked like a Fantasia Lamp: there was white stuff all through my lungs. “What is to say that this is not Lung Cancer?” I asked rather matter-of-factly of the Doc. “You wouldn’t be able to stand up for the pain,” was his equally matter-of-fact answer. “I am going to say that this is sarcoidosis in a fairly advanced state” he said. “More people die with sarcoidosis than from it” he went on “have you noticed that you have been getting shorter of breath of late?” I admitted that I had. I had just put that down to recently sedentary living and gaining in years (I was about 43 at the time).

The real shock to my system then was that I had a chronic disease that I knew nothing about. I had to monitor that disease and make sure it got no worse. I suddenly had multiple specialist’s appointments. I was getting older! Thankfully my wife’s health insurance covered everything except for a small co-pay. (A benefit which eroded in later years. The co-pay went from $10.00 per visit to $8,000.00 per year) My blood pressure had started to sneak upward by then as well.

I had this disease, possibly since birth, that I never knew about. Much like my hearing loss, it was really just a part of life.

So that was my second taste of vulnerability. Again it would not be my last! Feeling better because I was treating my sleep apnea did not make up for feeling bad about having this disease, but I was improving.

In April of 2009, (I was now pushing 50) I had started to bleed from the nose regularly and everything hurt from the top of my head to the tips of my toes. Movement was painful; resting was just as painful. I had put up with this agony for a week or so when I mentioned something to my wife (the habit of being invincible was still hard to break). It turns out that a mutual friend was having the exact same symptoms. Her diagnosis had been fibromyalgia and she had started taking massive doses of Vitamin C for it, and something called SAM-e for her state of mind. Fibromyalgia produces depression as one of its symptoms. Considering the pain I was in I could well understand this.

I started to do the same as she had, starting on 10 g of Vitamin C per day and 400 mg of SAM-e. It worked to stop the pain within 2 days. I later boosted the Vitamin C dose to 20g (5 doses of 4 grams 3 hours apart) when the pain started to return. I kept up with that dose for 6 months, then I started to back it off successfully. (I had numerous trials at backing it off, but they began to succeed at about the 6 month mark. The SAM-e I just went off, it was expensive, and of limited benefit to me anyway. I was still taking 10g of vitamin C a year later.

By the time two years was up, I had reduced my Vitamin C intake to a maintenance dose of 2 g once per day. By that time I figured I had beaten fibromyalgia with massive doses of Vitamin C over a long period of time. Vitamin C had me feeling better than I had in a long time.

That was my third bout with my own vulnerability, but the story does not end there.

I had been seeing a lung specialist for many years since I had been diagnosed with sarcoidosis. The shortness of breath was slowly getting worse, so she eventually put me on a steroid for asthma, which I was to begin taking immediately and was to take for he rest of my life.

Seeking for alternatives (and our insurance was beginning to cover less and less anyway) I went to a GP who was outside the mainstream and not covered by our insurance. He heard my tale of woe including sarcoidosis and fibromyalgia and promptly ordered a barrage of blood tests. Having heard me out, he was nearly convinced that my main problem was, in fact, celiac disease. He said that I was to take my medication as prescribed for as long as I needed it, just in case he was wrong.

The tests came back with a huge positive for wheat allergy, and he said that if I do nothing else, my health would improve if I were to live without wheat.

I decided that I could do anything for 3 months (that is generally how long it takes for a food sensitivity to show itself), bought a focaccia on the way home, and announced to my family that this may well be the last bread I ever eat. Within 2 weeks, my breathing was noticeably improved, so much so that I stopped taking the steroid. I never bothered to try wheat again (there would be accidental cases of wheat ‘poisoning’, which would prove the point anyway), I felt so much better without it that I was convinced.

I never went back to my lung specialist after that.

My new doctor told me that there are 3 proteins which our bodies treat very similarly, they are gluten (in wheat-related grains), casein (in all milk products), and soy protein (in soy products and tofu).

Now I need to digress a moment to tell of how much I used to love wheat, and what a chore it was to give it up. My wife, being a “nutrition nazi”, had turned me onto whole foods. By 2009 I was grinding my own flour from wheat berries and making my own fermented bread from it: we were more-or-less observing the Weston Price style of eating. Our friends used to like my bread when I made it, and once I had perfected the recipe, we ate very little commercial bread. (The focaccia I bought as our last loaf of bread was so I would not have to bake a loaf from scratch!). My wife tells the tale that, early in our marriage, I would go to a store at 3am to buy bread if we were out of it! I loved bread! For the doctor to suggest that I live without it was no small thing. For me to decide to live without wheat was no small feat either. During the course of many conversations about food allergies with my wife and my doctor, it became clear that we crave the foods we to which we are most allergic. My preoccupation with bread certainly fit into the “craving” category.

Of course, when I went off wheat, I started to eat more dairy. (I liked dairy almost as much as I liked wheat). Six months into the no-wheat thing I had to admit that dairy was filling in for it, so I would give dairy-free a 6 week trial (I was not going to give it a full 3 months!). If I thought life without bread was tough, life without dairy was tougher! It was in most of the substitute foods which I had become fond of, and besides, a life without cheese was barely worth living in my book! So at the end of 6 weeks, my wife came home with some goat yoghurt, hoping that it was far enough removed from cow and had so many probiotics in it that I might be able to try it and be OK. Terrible mistake, I got sick as a dog from it, damn it! I was going to have to live my life without wheat or dairy! So much for Weston Price eating; we still followed those principles but made adaptations for my growing list of allergies.

Over subsequent months, I tried eliminating many other things, none of which I had a reaction to when I went back on them. Eggs were safe (thank the gods), as was coconut, almonds, cashews, pineapple etc. The only other one was peanuts, and with bread and milk on the “No” list, it did not seem that hard to add peanuts to it as well.

One other factoid that came from my doctor’s research: in the studies he was reading, people who had sarcoidosis of the lungs were shown to be intolerant of gluten. There was every chance that my gluten-free life had also dealt with my sarcoidosis. I have since had chest ex-rays which confirm that there is no sign of sarcoidosis in my lungs!

By August 2011, after 2 years of going without wheat, I had lost over 50 kg (110 lb.) in weight. I never tried to lose a pound, I just stopped eating the things that were killing me. I was feeling better all the time as well. I had more energy than I had ever had before.

I had mentioned that my wife was interested in whole foods.  As a matter of fact, is she is diabetic, and highly allergic to corn. I have diabetes on in my birth family as well. All things considered, we decided that carbohydrates were probably not our friends. In hunting the Internet for recipes, we discovered that the people who were eating the way we had begun to went by the “paleo” tag. So when anybody asks us, we are paleo – – not because it is trendy, but because it is necessary for our well being.

It was facing my vulnerabilities, and dealing with the facts as they were rather than how I wanted them to be, that helped me to overcome sarcoidosis and tame celiac disease. It is no longer a chore for me to live without wheat and dairy, that is how I can write this piece at all, and I feel better than I ever have!

While it might be nice to end my discussion about vulnerability there, I have things which make these challenges pale in comparison.

I’m lucky to be alive!

I have suffered 4 strokes that I know about. Some have left me permanently altered, some have not. I will just add here that, should I have felt at any time that I was life-threateningly ill, I would have not hesitated to go to the Emergency Room.

Stroke 1- December 2012.

I call this a stroke because the numbness remains with me to this day, but in the grand scheme of things it really does not present as much inconvenience. I lost sensation in the ball of my left foot somewhere around December 15, 2012, by December 19 I was in hospital having an MRI. The doctors said it was probably a TIA and that it would rectify itself in a week. 4 years later I still have that symptom. They identified quite a few damaged spots in my brain and recommended that I take blood pressure medication. I tried several medications at that juncture, but I found the mental slowness that all of them induced to be intolerable. A bill for $60,000 of which we had to pay $8,000 deterred me from going back to hospital to be told nothing very much in subsequent events.

In time, I had more or less forgotten about that incident, though I was on a bunch of natural supplements which brought blood pressure down a little, but nowhere near enough.

I had always said that I did not want us to be in the USA for the 2016 US Presidential election. So we began to plan in earnest to emigrate. Our plan at that time was to emigrate sometime in 2015, maybe early 2016.

Stroke 2- November 2013

This is where things get serious! I went to bed one afternoon with a very bad flu. When I woke up, next day my entire left side was paralysed. “How do I get to the loo?” was my first thought. I figured that if I jammed my left leg and locked the knee, my bones would hold me upright, so that’s what I did. It was nearly a week before I ventured downstairs, by which time I was getting good enough at jamming my leg to drive our (manual transmission) car. Rather than letting it stay useless, I insisted on using my left hand wherever possible, and slowly some utility returned. It took at least 3 months before I could take our stairs in succession, and at that point I did so very gingerly. To this day, my left side is less capable than it was, but it is slowly improving. I did not see the point in going to hospital to be told what I already knew. I would, and did, work this out by myself. I did not need another $60,000 bill to deal with.

Stroke 3- May 2014

As if things were not serious enough at this point, they just got a whole lot worse! I went to the movies with my wife and son to celebrate his 11th birthday. When I walked into the theatre, I could talk just fine; when I came out, I was unable to talk at all! (And no, the movie was not that good!) My son, who had been in my at-home care from the time he was 6 weeks old, knew what I was thinking, even if I could not say it. He acted as translator while I figured out how to talk again. It was like somebody had put a 2 inch section into my tongue while I wasn’t paying attention. I knew what I wanted to say, but I could not say it clearly enough to be understood. Again I was not going back to the hospital to be told what I already knew.

I began looking for speech therapists to no avail at all. It was during this time that I decided to head home to Australia where health care is less of a crap-shoot and they ‘understand the question’. I had started to discuss this with my wife, but we still had a family trip to take and I was going to do it! (She suggested I stay home, but I refused.)

At this stage I could not walk 200 yards without stopping to rest.

Stroke 4 – July 2014

We went to the family gathering in upstate New York from our home in Michigan. This was to be our last family reunion before we emigrated. On the way, we called in on a dear friend in Ohio who has since passed on. I think we took the last photograph of her alive!

We were due to travel back home to Michigan on my birthday, so we celebrated early. It was during that trip home that I told my wife she would have to take the wheel, because I was having trouble driving on the “wrong side of the road and the wrong side of the car” (I am from Australia, but I had been driving without trouble in America for 13 years!)

I call that ‘stroke number 4’ and my Australian neurologist seems to think that it was. I had one last professional commitment to fulfill, which I did the following Saturday night. I drove to a gig an hour away, and home, then I hung up my keys for good. I had to concentrate way too much to drive that night. I am glad I got away with it.

So here I was, unable to speak in more than a whisper (I had worked out pronunciation, but still had not learned projection) and unable to drive without second-guessing myself. It was time to call on my family for help. Within a day, I had a place to stay in Australia and someone to stay with me at all times. (Thanks, Ann!)

Within 5 days, we had figured out how to pay my air fare home (Thanks, Mark and Paula!) and I was ready to fly out in September of 2014. My wife and son would tie up the loose ends of our life in America and join me later.

I have never traveled well, being unable to sleep in a moving vehicle makes a difficult 30 hour trip into a grueling feat of endurance. I was a basket case by the time I reached the other end.

Within a week of arriving, I had seen a medical doctor and had appointments with many specialists. We were going to see what damage had been done and what we could do about recovery! An MRI showed 4 strokes: 2 clots and 2 bleeds. At least here the medical establishment were not going to be putting their hands out at every turn for money. I believe I had to pay one bill for $200; everything else was covered by medicare. The speech therapist was brilliant. She had me ready to deliver a 2 hour online lecture in November 2014. I still speak with a bit of an accent, specially when I am tired, but I can make myself understood.

There was a period between stroke #3 and early October 2014 where I could not understand a paragraph of written text. I could read every word, but I could not tell what they meant. That particular debility rectified itself as quickly as it had appeared. One minute I could understand nothing, the next minute it was as clear as a bell. Just because I could understand it did not mean I could remember writing it. It was quite novel to read something I had written many years before and not recognise it as my own work until I read the by line.

Anti-hypertensive drugs slow my mind down, there is no arguing about that. I take them now because I do not want the strokes to continue. I have noticed, though, that my mind is pretty much as agile as it ever was, it is just translating what I know into language or movement that has become arduous. Whether it is writing or speaking, it is all difficult, but it continues to get easier as time passes. Anti-hypertensives also mess with my body’s thermostat. I get extremely cold when most folks are a bit cool, I also get extremely hot when most folks are just warm, but that too, is rectifying itself over time.

Singing has helped me no end. I was a choral singer until stroke #3, and I wanted to get that ability back. I can sing without slur or accent! It uses a different part of the brain than does speech. Working with ‘Stroke a Note’ choir has helped me to find my confidence again.

If I have a pet peeve, it is being “infantilised” by well meaning folks who figure that I am disabled, therefore they have to do everything for me, including think. I am less physically agile than I once was, and we need to make some allowance for that, granted. I am as mentally agile as I ever was, it is just expressing my thoughts that is more difficult than it used to be.

I consider myself lucky to be alive, because my brother, my father, and my grandfather all died before their 56th birthday, and I had stroke number 4 around the day I turned 55.

I have always believed that we make our future; that nothing is fated. Had things worked out differently, I might have died in the midst of all this, but I believe I made a decision many years before which meant that this would be a difficult time rather than a deadly one.

Marrying my wife and having our son has given my life renewed purpose. The dietary changes have meant that debilitating injury does not need to stay that way. My brain-scan from 2012 shows many small spots of damage. My scan in 2014 appears to show much healing, along with much more new damage. I now take anti-hypertensive drugs to reduce the risk of new damage.

Recovering after stroke is not easy. Progress is so slow and sometimes it does not appear to be there at all, but we persist anyway. The “fog” of anti-hypertensive drugs passes with time. The tiredness has not left yet, but healing a brain takes a lot of work.

So here I am, two and a half years past my last stroke.

  • I walk with a cane, but hey, I can walk and 3 km is not out of reach these days!
  • I speak with a strange accent, but hey, I can speak and be understood!
  • My reflexes aren’t what they used to be, but I still have them!

Life is good. Occasionally I have to remind my legs that they are walking and would they please continue. Moving from sitting to standing and from standing to sitting are still challenging. Talking and walking are very deliberate processes these days. Nothing is impossible, but it is truly just not worth the effort sometimes.

I occasionally come across folks who like to whine about this or that. I must confess to feeling a little smug when I think “hey, we woke up this morning, let’s not waste our life wondering what might have been.”

Lucky to be Alive

I figured it is about time I told the story of the strokes I have survived. I have suffered 4 strokes that I know about. Some have left me permanently altered, some have not.

Stroke 1- December 2012.

I call this a stroke because it remains with me to this day, but in the grand scheme of things it really does not present as much inconvenience. I lost sensation in the ball of my left foot somewhere around December 15, 2012, by December 19 I was in hospital having an MRI. The doctors said it was probably a TIA and that it would rectify itself in a week. 4 years later I still have that symptom. They identified quite a few damaged spots and recommended that I take blood pressure medication. I tried several medications at that juncture, but I found the mental slowness that all of them induced to be intolerable. A bill for $60,000 of which we had to pay $8,000 deterred me from going back to hospital to be told nothing very much again.

In time, I had more or less forgotten about that incident, though I was on a bunch of natural supplements which brought blood pressure down a little, but nowhere near enough.

I had always said that I did not want us to be in the USA for the 2016 US Presidential election. So we began plan in earnest to emigrate sometime in 2015, maybe early 2016.

Stroke 2- November 2013

This is where things get serious! I went to bed one afternoon with a very bad flu. When I woke up, next day my entire left side was paralysed. “How do I get to the loo?” was my first thought. I figured that if I jammed my left leg and locked the knee, my bones would hold me upright, so that’s what I did. It was nearly a week before I ventured downstairs, by which time I was getting good enough at jamming my leg to drive our (manual transmission) car. Rather than letting it go, I insisted on using my left hand wherever possible, and slowly some utility returned. It took at least 3 months before I could take our stairs in succession, but at that point I did so very gingerly. To this day, my left side is less capable than it was, but it is slowly improving. I did not see the point in going to hospital to be told what I already knew. I would, and did, work this out by myself. I did not need another $60,000 bill to deal with.

Stroke 3- May 2014

As if things were not serious enough at this point, they just got a whole lot worse! I went to the movies with my wife and son to celebrate his 11th birthday. When I walked into the theatre, I could talk just fine, when I came out, I was unable to talk at all! (And no, the movie was not that good!) My son, who had been in my at-home care from the time he was 6 weeks old, knew what I was thinking, even if I could not say it. He acted as translator while I figured out how to talk again! It was like somebody had put a 2 inch section into my tongue while I wasn’t paying attention. I knew what I wanted to say, but I could not say it. Again I was not going back to the hospital to be told what I already knew.

I began looking for speech therapists to no avail at all. It was during this time that I decided to head home to Australia where health care is less of a crap-shoot and they ‘understand the question’. I had started to discuss this with my wife, but we still had a family trip to take and I was going to do it! (She suggested I stay home, but I refused.)

At this stage I could not walk 200 yards without stopping to rest.

Stroke 4 – July 2014

We went to a family gathering in upstate New York from our home in Michigan. This was to be our last family reunion before we emigrated. On the way, we called in on a dear friend who has since passed on. I think we took the last photograph of her alive!

We were due to travel back home to Michigan on my birthday, so we celebrated early. It was during that trip that I told my wife she would have to take the wheel, because I was having trouble driving on the “wrong side of the road and the wrong side of the car” (I am from Australia, but I had been driving without trouble in America for 13 years!!)

I call that ‘stroke number 4’ and my Australian neurologist seems to think that it was. I had one last professional commitment to fulfil, which I did the following Saturday night. I drove to a gig an hour away, and home, then I hung up my keys for good. I had to concentrate way too much to drive that night. I am glad I got away with it.

So here I was, unable to speak in more than a whisper (I had worked out pronunciation, but still had not learned projection) and unable to drive without second-guessing myself. It was time to call my family for help. Within a day, I had a place to stay at home in Australia and someone to stay with me at all times.

Within 5 days, we had figured out how to pay my air fare home and I was ready to fly out in September of 2014. My wife and son would tie up the loose ends of our life in America and join me later.

I have never travelled well, being unable to sleep in a moving vehicle makes a difficult 30 hour trip into a gruelling feat of endurance. I was a basket case by the time I reached the other end.

Within a week of arriving, I had seen a medical doctor and had appointments with many specialists. We were going to see what damage had been done and what we could do about recovery! An MRI showed the 4 strokes , 2 clots and 2 bleeds. At least here the medical establishment were not going to be putting their hands out at every turn for money. I believe I had to pay one bill for $200, everything else was covered by medicare. The speech pathologist was brilliant. She had me ready to deliver a 2 hour online lecture in November 2014. I still speak with a bit of a slur, specially when I am tired, but I can make myself understood.

There was a period between Stroke #3 and early October 2014 where I could not understand a paragraph of written text. I could read every word, but I could net tell what they meant. That particular debility rectified itself as quickly as it had disappeared. One minute I could understand nothing, the next minute it was as clear as a bell. Just because I could understand it did not mean I could remember writing it. It was quite novel to read something I had written many years before and not recognise it as my own work until I read the by line.

Anti-hypertensive drugs slow my mind down, there is no arguing about that. I take them now because I do not want the strokes to continue. I have noticed, though, that my mind is pretty much as agile as it ever was, it is just translating what I know into language or movement has become arduous. Whether it is writing or speaking, it is all difficult but it continues to get easier as time passes. Anti-hypertensives also mess with my body’s thermostat. I get extremely cold when most folks are a bit cool, I also get extremely hot when most folks are just warm.

Singing has helped me no end. I was a choral singer before stroke #3, and I wanted to get that ability back. I can sing without slur or accent! It uses a different part of the brain than does speech. Working with ‘Stroke a Note’ choir has helped me to find my confidence again.

If I have a pet peeve, it is being “infantilised” by well meaning folks who figure that I am disabled, therefore they have to do everything, including think, for me. I am less physically agile than I once was, and we need to make some allowance for that, granted. I am as mentally agile as I ever was, just expressing my thoughts is more difficult than it used to be.

I consider myself lucky to be alive, being that my brother, my father, and my grandfather all died before their 56th birthday, and I had stroke number 4 around the day I turned 55.

I have always believed that we make our future, that nothing is fated. Had things worked out differently, I might have died in the midst of all this, but I believe I made a decision many years before which meant that this would be a difficult time rather than a deadly one.
So here I am, two and a half years past my last stroke. I walk with a cane, but hey, I can walk and 3 km is not out of reach these days! I speak with a strange accent, but hey, I can speak! My reflexes aren’t what they used to be, but I still have them! Life is good. Occasionally I have to remind my legs that they are walking and would they please continue. Moving from sitting to standing and from standing to sitting are still challenging. Talking and walking are very deliberate processes these days. Nothing is impossible, but it is truly just not worth the effort sometimes.

I occasionally come across folks who like to whine about this or that. I must confess to feeling a little smug when I think “hey, we woke up this morning, let’s not waste our life wondering what might have been.”

Looking backward

Wow, a lot has happened.

I intended to post a lot more and a lot more often, but our blog was on a corrupted part of a server, or something. (I never asked what happened.) It disappeared completely!

Our service provider was able to get it all back up (thanks, Steve!) but on a new version of the software, which has meant having to figure out the new software, reinstall Discuss, get my account straighthened out, and all that comes up with almost starting over. Fortunately, it looks like all the old posts are there. (I haven’t found the old drafts, but that’s not a disaster.)
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As I’m sure you will remember, Rod has been having strokes for about 20 months now.  The first one was mostly annoying to him since it caused him to lose sensation on the left side of his body, but in May (on Jack’s 11th birthday, actually) he had the first of the more serious strokes.

That one left him unable to speak clearly or to write for several months. He later had a stroke that caused no discernable physical symptoms but had a serious effect on his cognitive function.  He became really confused and started to need to sleep a great deal.  At first it was 20 hours per day, which was really rough for poor Jack.

My honey is a fighter, and he is fighting his way back from these, too.  He is now intelligible unless he is very tired, but his diction is not clear and his voice is weak.  However he is able to function again and he is far less confused, though he still needs a long nap mid-day to get through the day.

The disruption of his cognitive function meant that it was no longer safe for him to drive, which means that all of his driving chores (shopping, taking him to the doctor, etc) are now on me. Fortunately, my manager is very understanding and he is happy for me to work from home and come and go from the office as needed to take care of things.

The good news is that Rod’s doctor has continued to research Rod’s difficult case.  (None of the “normal” blood pressure medications keep his blood pressure down for more than a few days, but all come with hideous side effects that last long after his blood pressure has returned to “scary high”.  He found an off label medication, intended for treating ADHD, that sometimes effects blood pressure.  It works!  It lowers Rod’s blood pressure so well that he found the upper limit when he passed out with blood pressure so low his meter couldn’t read it!  Yikes! That was scary, but it’s also a relief that he can keep the pressure down to protect his brain.

However the pill can’t treat the *cause* of the persistently high blood pressure and we simply can’t afford the tests that would be required to figure that out.  Our operating theory is that it may be scar tissue from a head injury he recieved 20 years ago.  The injury was serious enough to cause real trouble then, so it seems quite possible.  But that would requires a very long and involved MRI to locate and quantify the problem and then comes the treatment, which also wouldn’t be cheap.

So… *sigh*  Rod is returning to Australia in 13 days!  He can get free and low cost medical care there.  He will feel less “useless” than he says he feels here, watching Jack and I carry the load he has always carried, so it will be good for his mental health.  He already has a doctor there thanks to his sister, and his sister will take over his care. I’m eternally grateful to our friends Mark T and Paula M for, between them, making this possible!  No way could we have pulled this off without them.

The Smiths in our last family portrait in America
(c) 2014 Erika Woolams

That leaves me to sell the house.  It’s been on the market since June but since it is at the price we owe the bank no one has been willing to buy.  We lower the price this week.  I got the paperwork from the bank that didn’t *say* they would accept less, but did ask if we had an offer and how much it was for…which I am taking to mean that we can offer it at market value.  It can’t close in two weeks, even if someone grabs it the day the price goes down, but I am hoping it sells so I only have to handle packing and signing on my own. (Well, and moving to an apartment, and arranging to have all our goods shipped to Australia, and…) I lean really hard on my honey and all of this is pretty scary.

Rod and Jack have built an amazing group of friends, who have all kindly taken me in, too.  They have offered Jack a place in their homeschools so that I can continue to work – and I am hoping that with so many of them splitting the job, it won’t be too onerous for anyone to have an extra kid around.  I am truly amazed at how loving and generous this group of friends is.  Actually, when I think about it it makes me cry.  So, for part of September, October, November, and part of December, Jack will tour his friends lives and see how other families do home education – and they tell me that they are looking forward to seeing how Jack does his.  (But he will be cutting way back for those months, since his studies take three hours per day, which would be way too much to ask of his friends. He will take one book per day.)

I packed my craft supplies over the weekend.  I miss crafting, but there really hasn’t been time lately. It seems like every time I think I have time to pack the last few rooms, we have a viewing so that I spend the time polishing the house for that instead. I also need a completely dry weekend so I can put the last of the stuff at the curb.

Anyway, that’s what we’re up to.  I hope that all is well with any of you who are still around.  🙂

 

Changes for a new year

Happy New Year!!

Wow, the snow is coming down with a great deal of dedication today. Rumour expects 10 to 12 inches, followed by the lowest low temperatures in decades. A whole lot of folks are hoping for a snow day or two. I am enjoying the snow, whether I get a snow day or not. I love winter! Of course, it’s now me who shovels the drive..

The holidays were lovely, and I really celebrated being able to find cookie recipes that were more or less “safe”. Come to find out, though, my body doesn’t agree that they were safe. At least not in the quantities I ate them. I feel pretty dreadful, as does Rod. We discussed trying a month or so of stage 1 GAPS, but on re-reading the list of allowed foods, I don’t think that would work. It basically amounts to lots and lots of stews…and that would be a pain to carry to work and hen eat cold. Besides that. it rules out my beloved coffee. Nope. Not going there.

So we are thinking we’ll go super strict with primal/paleo for a few months. That we can do. Mostly, that we do anyway, except for the occasional potatoes and safe cookies. Sadly, the potatoes have gradually stopped being occasional as have the cookies. I generate a fair amount of coconut pulp when I make my coconut milk and Rod has regularly turning that into low sugar cookies. They are yummy – but Jack doesn’t like coconut. so mainly Rod and I eat them. Even low sugar cookies can become a problem if you eat enough of them. Now, what can we do with the coconut pulp other than compost it…?

Continue reading Changes for a new year

December 16, 2013: on periodontal disease, baking soda, and tooth remineralization

As I have blogged about before, back in 2006, I was diagnosed with periodontal disease. By 2010, I had gotten it under control and I was very pleased.

My routine had been to swish my mouth with hydrogen peroxide and tea tree every morning before I brushed my teeth, and to brush my teeth once per week with baking soda along with nourishing teas and the daily drinking of stock.

At some point, I got lazy. When I ran out of toothpaste, I just brushed with baking soda.

I knew the risk. Baking soda is pretty harsh to use every day, and at the back of my mind was the thought that I should look into less harsh toothpaste recipes, but I never got around to it.

Then a few weeks ago, I started to notice that my teeth were back to being very sensitive. When I looked closer, I realized that my teeth were very white – but no longer shiny.

Uh oh. I was lazy too long and I seem to have damaged the enamel of my teeth. Oops.

I dug out my copy of “Cure Tooth Decay” and started doing some research. I’m not sure yet that it is possible to completely heal my teeth, but it’s worth a try. Even if I can’t grow the enamel back, it sounds like I can strengthen the dentin and resist more trouble.

I have switched to brushing and oil pulling with coconut oil, I have renewed my efforts to eat lots of stock and drink plenty of nourishing teas, and I have been taking fermented cod liver oil with butter oil twice per day.

After a few weeks, my teeth are far less sensitive – that could simply be from not using the baking soda, though. They are starting to be shinier again, though far from as shiny as before. I’d say the jury is still out, but I’ll try to keep you posted on my remineralization experiment.

Oh, and Jack has finished his fractions book and is begging for the next book – decimals and percents. I’m glad he likes maths but I am having trouble keeping up with him. I should figure what he’s “supposed” to know in fifth grade and maybe slow him down a bit or relax and go with it until he’s done as much as his peers. …or maybe we can get the next book from the library…

Have a great week everyone!

20 July 2013

Hey! Happy Saturday!

First off, another homeshooling bit. I have been gazing longingly at the Junior Great Books program for years. It looks like a really great program., but I’m not able to find anyone running the discussion groups near here, and I can’t afford the “whole kabooble”, which I figured I’d need if I was to try to have a three person “book club”.

Jack and Noah

However, I found some of the books at the Friends of the Library shop, and I bought one to have a look at it.  Come to find out, it has questions and advice throughout the book  that we could use to approximate the book club on a small scale.

 

The whole idea from my point of view is to help Jack take the next step in his reading proficiency by learning to really think about what he’s reading. These books seem like a good first step to do that.  (We had a look at Deconstructing Penguins, but he’s not quite there yet.  He found the whole concept frustrating, but maybe in a  couple of years, after addressing literature this way, he’ll be ready.) Continue reading 20 July 2013

4 July 2013

Discovering Hail April 2013

Well, it’s the fourth of July, and I still haven’t planted anything but my lettuce box. (And I was amazed at how few seeds there were in the packets!  I have barely enough lettuce all told, for one salad every few weeks, out of 7 packets!)  Odds are I’m not doing a garden this year. I’m disappointed, but really, when it was time to deal with it, I had nothing left to give to a gardening project. Oh well. I would have liked to, but it’ not the end of the wold.

Since Rod has been feeling better, and now that I have my feet back under me, Rod and I have been taking a good hard look at Jack’s curriculum. Going in to this unit, I had been concerned that we were too light on maths and science, two subjects I know relatively little about. I had provided science materials, but the more organized materials didn’t work for Rod’s style of teaching – and many of them, though it wasn’t obvious from the research I had done, really required a group setting.  With maths, Rod was working on arithmatic “without a net”.  I trust him…but it was hard to see what Jack was learning and I worried that we might miss something important. Continue reading 4 July 2013

January 2013

Hey, all! Wow, it’s been a long while; my apologies.

Mainly, it’s been a problem of writer’s block, but also a bit of being very busy. I think I’ve mentioned that only bringing my computer out on weekends makes it harder to blog. Weekends are packed pretty full most weeks, and even making time for a brief post seems harder for some reason. (Maybe I think at some subconscious level that since they’re less frequent they should be more important.  If that’s it, I need to get over it.)

Anyway, soon after I got the last of the cards made and mailed, we had quite a shock here at Chez Smiffy.

Rod ended up in the hospital with a minor stroke! YIKES!!

Continue reading January 2013

What I’ve been up to…

Hey, all. I can’t believe that I had a three day weekend, with nothing planned, and I still didn’t manage to post! I did however, have a wonderfully relaxing weekend and the one following was also delightful, if not as calm.

I’ve been getting a decent amount of crafting done, which always leaves me feeling relaxed and contented. It’s more expensive than meditation, but it also leaves a record of my love for my beautiful children and grandchildren and it leaves me feeling as refreshed as what other people describe as the benefit of their meditation. I’ve never really gotten the hang of the more familiar meditation, I think. I do sometimes sit alone with my thoughts and wander whither they lead. Daydreaming, my mother calls it. That might be sort of like meditation.

Come to think of it, I also get that sense of calm from washing dishes and doing laundry. My mother would faint if she read that. I hated doing the dishes when I was a kid. But the repetition and mindlessness that drove me nuts as a child, now soothes me and leaves me alone with my thoughts. It’s funny what a half century can do for one’s thoughts on a task.

Continue reading What I’ve been up to…

Happy New Year! (and why I’ve been away)

Happy new year, everyone!

One of the New Year cards.

Hey, it only took me two weeks a month to get back to posting!

I’ve been feeling bad about that and wondering whether I should stop trying.  I don’t really want to stop blogging, though.  That’s not the problem. The problem has been finding anything to talk about when what’s on my mind isn’t easy to talk about.

So, what happens when a fat activist isn’t really fat anymore?  Is she kicked out of the club?  How does she reestablish her self image?

That’s the big thing.

One of the things that came up at that last doctor’s appointment is my weight.  I have a history of disordered eating and when I was much younger I developed an obsession about becoming thin .  Nothing ever made that happen — not even 900 calories a day for three years and walking an average of 17 miles per day.  Eventually, I realized that it was insane to keep trying to be thin instead of just taking care of myself and living my life.

In an attempt to keep my approach to food and my body healthy, I don’t own a scale and I avoid looking at the scale when I let the doctor’s office weigh me in.  My doctor’s staff is very good about that, but my (naturally very thin) doctor, while he never harasses me about my weight, doesn’t really get it and forgets that I just don’t want to think about the numbers.  So…he told me how much weight I had lost since I started seeing him.  He apologized, actually — I think he was being funny.

At our first meeting, we discussed weight, because well, there I was: fat.  I told him that I wasn’t interested in working on my weight.  I felt and feel that if I take care of my health, my weight would find its own perfect place.  (I assumed that would still be fat, of course, since I always had been fat.) He shrugged and let it go.  But on my last visit, he told me about my weight loss and apologized because we had agreed not to work on my weight.  I forgave him and reminded him that if I work on my health, my weight will take care of itself.

But that information was still a bit of a blow.  I am now less than half the weight I once was.  I weigh fewer pounds than I have lost.

Obviously, I was aware that I was losing weight —

  • the way my clothes fit has been an ongoing challenge that has forced me into the resale shop to get new clothes every few months.
  • the way people have been treating me has changed right along with my dress size.      If they were less than forthcoming with their opinions about my size before, they are inadvertently letting me know, now, how little they thought of anyone who would “let themselves go like that”.  Suddenly, some people are treating me like I’ve suddenly become human.  Being more socially acceptable now just pisses me off.  If I wasn’t fine with at 350 pounds, I don’t need your friendship now.
  • That person I watch brush her teeth every morning no longer looks much like me.  She has loose, rumpled skin and angles where I’ve never seen angles before.  Some of them are angles I have dreamed of having most of my life, but it’s still weird to see them after more than a half century of being round.
  • I get asked pretty regularly whether I’ve been losing weight or how much I’ve lost.  A very few people have asked whether that’s a good thing, and I love them for their sensitivity.  Most seem to assume that it’s positive and act like I’m lying or trolling for more compliments if I’m less than thrilled.  Is it a good thing?  Well, it’s a side effect of a very good thing, so it’s not bad.  But it’s also not comfortable.  (Neither was putting on 60 pounds in three months when I started a medication that caused weight gain).  Stability of self image is very important — at least to me.
  • I get asked occasionally when I had “the surgery”.

I can cope with all of that, I guess, but the really hard part is being unable to talk about how hard it is emotionally. It’s funny.  When people gain weight, they’re allowed to moan about it, but if we lose weight, we’re supposed to greet the change with unmitigated joy.  We’re not allowed to be disconcerted by waking up in an unfamiliar body or irritated that our favorite clothes don’t fit anymore.  Having expressions of the discomfort be met with disbelief is hard.  So I mostly made my weight a topic that is not open for discussion.  But sometimes it’s on my mind enough that it means I am hard pressed to find anything else to talk about.

Rod has pointed out that my “fat activism’ had long since given way to an outlook of Health at Every Size, and Every Size means thin as well as fat, and he’s right.  Hearing it helps, too.  It doesn’t change the weirdness of people’s reactions or of catching sight of myself unexpectedly in a reflective surface and seeing a stranger, though.

OK, now that I’ve had that whine, maybe I can find other things to talk about.

Thursday

Life is grand! I hope you all are having as good a holiday as we are!

Oliver

I had intended to blog every day during my vacation, but you, I have just been having way too much  fun relaxing and doing very little.  We have had guests over for dinner a couple of times, so the house has been staying pretty clean, but mainly I’ve been just hanging out.

One thing I’ve been doing a lot of is reading. Specifically, I have been reading a book that my friend, Sharon, loaned to me.

I have to admit that the bright pink cover, the hyperbole in the title, and the general lightweight tone of the cover would have kept me from ever noticing this one or being curious about it.  But I told Sharon I’d at least skim it, and so I did.  Then I started to read.  I have to agree — this book is well worth while.

One co-author is a a bit hard to take — his language and approach are, shall we say ” not refined”.  And he is, shall we say, EXTREMELY enthusiastic.  But he can be funny, and he’s the energetic, enthusiastic 77 year old proof of concept.  I kind of like him, but he drives Rod crazy. The other co-author is a medical man, the doctor of the first, and while his writing style is easy to read, he’s all business.  He explains the science behind the advice the book doles out. The authors each have their own well labeled chapters, so it’s possible to skip the “big sell” and still get a lot out of the book.

At the very least, I think chapter 3 and 5 should be required reading.  Those are the chapters in which the medical man explains the biology of aging and decay and the biology of growth and renewal.  (I’m not done the book yet, there may be more must reads.)

So, you ask, what is this book, already?

It’s called Younger Next Year by Chris Crowley and Henry S. Lodge, MD.

It really should be called “”Optimal Health in the Final Third of Life“, but I guess that’s not sexy enough to sell and they really do have an important message to get out.

Mostly their message is that old age as we know it isn’t the way it has to be.  It’s not really aging that we see in older folks in the western world, it’s decay from a lifestyle that uses up our bodies way faster than it should.

I find Crowley’s enthusiasm amusing and kind of compelling, and I plan to get my own copy of this book before I have to give Sharon’s back and see what I can do with the science.  I don’t agree with everything in the book, even only half way through — but that’s to be expected.  I’m opinionated and cranky.  I have no intention of joining a gym or getting a trainer (a doctor and lawyer telling me how to get fit — right.) but I will read and re-read the science and will use what I am learning to see if I can’t improve my health some more.

I think that I find the book *so* compelling because I have watched it in action.

My Mom can out walk me, and she sure doesn’t give the impression of being 20 years older than I am — physically, I think she’s about the same age I am.  Mom started in her 40s to walk 45 minutes every morning, rain or shine and it has really payed off.

Until normal pressure hydrocephalus took him down at age 80, John ran a couple of hours every morning. At 79, he was stronger and more fit than I ever expect to be.

And my very first role model for the final third of my life, my first husband’s grandmother, broke her hip when she was 85. She fell out of a tree she was trimming. She was the sort of person who never sat still. She walked everywhere and she walked fast. She was strong and youthful, and then she was gone. That’s how I want to go — and I think 120 would be a fun age to get to as long as I am strong and healthy.

Anyway, that’s what I’ve been doing, mostly. Also cooking and cleaning and scrapbooking — I have decided that scrapbooking is my priority for this year so very few people will be getting hand made cards. So far, I’ve gotten almost 10 pages done…what a rush! And doing one page after another seems to bring out the experimenter in me. I can fuss over a single layout for weeks, but when I am doing one after another I seem to get much crazier ideas to try and an amazing number of them work. Not that the fast paged are masterpieces, but they’re decent and they’re fun. (Maybe I’ll get organized to scan some and share them, even.) And really, not every photo warrants a masterpiece.

Have a great New Year’s eve, everyone!

Saturday (again)

I started out to scribe the longevity exercises that Rod and I do most mornings, and decided that it was not a good morning for that. Way too much to tackle when my attention span is that of a gnat. Rod is working on it, too, so I hope we’ll get something up one of these days soon.

Smiffy and me, December 10, 2011
Me and my honey, December 10, 2011

My dairy free experiment lasted all of a week.  I know I will eventually cut it out completely, because the dark circles under my eyes are a message from my body.  Milk is not doing good things for me. (And new symptoms have cropped up since I started with milk again — classic lactose intolerance tummy issues.  Yuck.)  However I found it very, very hard to  stay with dairy free this time.

I need to find better solutions than I currently have for my dairy replacements.  Basically, I use milk in my coffee,  the occasional bite of cheese with an apple, and as butter on steamed vegetables.  I can do without all but the milky coffee.  Rod uses coconut milk and that’s almost enough.  The problem is the lactose, I think.  I miss that very mild sweetness in my morning brew.  Rod uses maple syrup, but I don’t want to add any more stress to my poor pancreas.  I’d like to find a way to make the coconut satisfying without any actual sugar.

So far, coco nibs and cinnamon in the grinder with the coffee beans has been the best solution.  The cinnamon tastes a bit sweet, but it actually supports my pancreas rather than stressing it. I’ll be working on solutions for the next couple of weeks and in the new year I will try dairy free for a month again.  (I am tricking myself.  I really hope the month will extend to forever, but that seems like such a LONG time.)

The photo is one that Austin’s Mom, Christy, took for us.  We had her take some informal “holiday” shots at the community center last weekend so that we have some to use in our New Year’s letter.  I like this one, but we won’t be using it for the letter because Jack was sprawled across my lap.  We have others that show all of us better — Rod smiling and Jack visible, even!  But I do like this couple shot.  We don’t have many of those.

Rod figures that my huge glasses age me because they haven been out of style so long.  I think his glasses hide his beautiful eyes.  We’re probably both right — but he isn’t worried about showing off his beautiful eyes and I have no problem with looking old.  Ha!

Wonderful news!  Sara, age 10 months, is crawling!  Not just belly wriggling, but fast, efficient crawling.  I saw a video this morning.   They grow so fast!

Speaking of the holiday letter — I have been seeing a lot of hate for the custom broadcast holiday letter.  I don’t really get why.  Of course some are full of bragging and and others are full of moaning.  So are the conversations of those folks.  Yes, they are impersonal.  But someone who care s a lot probably has heard it all in regular letter (or e-mail, or Facebook) exchanges.

I like holiday letters.  I get a few letters from friends and relatives I don’t get to see enough of, and while they’re not the same as a “personal” letter I enjoy them very much.  I see those broadcast letters as a way to get a peek into the lives of people I care about.  If we were close, I would know all that and more, but we can’t be close to everyone we care about — there isn’t time.  I see my own New Year letter the same way — a way to give people I care about a glimpse into our world. I hope they enjoy knowing  a little more about what’s up with us. Some people know most of the news, but many don’t.  The ones who know what we’re up to get a new photo for their trouble.  I always hope that my note will inspire someone to write back, and sometimes that even happens.

What do you think about broadcast holiday letters?

OK, off to finish the roasted vegetable stew — an experiment.  So far it smells pretty good.

Happy Samhain!

Happy Samhain, everyone!

Our gifts are unwrapped and Jack is up to his ears in his new marble run. Once he’s exhausted the potential of that, he has a couple of new books from an author he likes and I’m sure he’ll fall headfirst into those for a day or so. We expect to hear from him again in a couple of days to play his new game. He has been so very excited for Samhain to finally get here that he didn’t even mind that half of his gifts are late.  (Rod, genius that he is, put a much better spin on it — Jack’s Samhain is now going to be extended by several days.)

I have been reading Dementia Beyond Drugs a book about dementia care. Having seen two friends through this, I find the book compelling. It’s written in a conversational tone that makes it easy to follow, but it goes much deeper than the usual “What to do when your father has dementia” books. So far I am only through the part of the book in which Dr. Power explains why drugs aren’t really helping and he alludes to better ways to make dementia less frustrating and frightening to the person living with it. I hope and expect that he will go more deeply into what one can do later in the book. It’s largely written from the perspective of a doctor who wants to change the care offered in nursing homes, but his reasoning applies pretty well to friends and family who want to help make a loved one’s life easier.

It’s a medical book, so it’s relatively expensive. I borrowed it from the library, but it’s now on my list of books to own some day.  If you are going through the dementia maze with someone you love, I do recommend it. It’s sensible, it’s sensitive and so far I am finding it helpful for simply understanding what’s going on in the mind of someone who can’t remember.

We have just finished up reading the second in Mary Stewart’s Arthurian cycle and have moved on to The Story of the Amistad. Jack is reading this time, and it’s been amusing and interesting to hear his side commentary. He is, of course, horrified by how the Cubans treat the Africans, and he is offended to hear people referred to as “cargo”. None of that surprises me.

What took me by surprise is when he read a sentence twice, and then asks “Where’s the comma? That sentence needs a comma!” We haven’t formally studied grammar or punctuation, so I was a little startled that he noticed. Then again, as he has been learning to write he has also been learning about where and how punctuation is used. I guess it clicked with him more thoroughly than I’d realized.

We’re not unschoolers, but I am very frequently reminded that unschoolers are on to something. Kids will learn whether we know that we’re teaching or not.  They really will.

Oh, it would seem to be the batteries and not the camera that are giving out. I knew that rechargeable batteries wear out eventually. What I had forgotten was that when we last replaced all the batteries, there was one older set that was still working well. I think those just gave out. That’s a major relief. While I’d love to have a new camera, the reality is, it would be many many many months without a camera to save for a new one. I’m glad that’s not necessary. Yet.

On the subject of cameras…I had reluctantly conceded that moving from a high end ‘point and shoot’ to a DSLR camera was unlikely to be in my future. But you know, the more I think about it, the less unhappy I am with that. While yes, in theory, the photos I would take with a DSLR would be far higher quality, I have been thinking about my one experience with a DSLR. I was amazed at how beautifully the camera worked, how it did exactly what I expected at every turn, and how utterly perfect the captures were compared to my own. That was bliss! But I have also been realizing that I was mildly frustrated with the limited range of the lens. I think I would grow more and more frustrated … and even if each of the lenses were not as expensive as a new camera, I think I would be irritated by having to stop and change lenses. I just *like* the convenience of a fixed lens, I guess. And over time, the point and shoot camera quality is rising, so that one day what it requires a DSLR to do may be possible with PaS.  Of course, the DSLR will still likely be worlds ahead, but we can’t win every time.  😉

Hmm.  Rod and I took a couple of days off and didn’t do our qi gong over the weekend,  BIG mistake.  I woke up in a lot of pain this morning.  I knew it was helping my aches and pains, but I think I underestimated how much it was helping.  It was nice to sleep in, but I think I’d better commit myself to doing the exercises whatever time I wake up.  I don’t like to hurt.  The main problem is my left shoulder.  I don’t know whether it’s a torn rotor cuff or frozen shoulder or what, but it has little range of motion (more when I do qi gong) and it is gradually making my neck, shoulders, and upper back sore from the weird contortions required to accommodate it.

I think I’ll go do my qi gong before I start cleaning.   Happy Samhain and I wsh you all a GREAT day!

Why I still believe in health at every size

I have LONG been a proponent of Health at Every Size. (Since the mid-1980s.)  If you’re not familiar with HAES, the short version is that people can and should care for their bodies whether or not it ever results in the loss of a single pound.  The basic philosophy is to love and honour our bodies and to care for ourselves and our bodies without worrying about weight.

In my opinion, weight loss dieting is futile and stupid. It makes us hungry, obsessed with food, cranky, tired, low energy, and miserable.  It can restrict our eating in ways that are unsustainable in the long term, either depriving us of necessary nutrients or restricting our calories so extremely that we come close to shutting down our metabolism.

Calorie restriction may seem to work at first, but for some people it causes a slowing metabolism by forcing our body to maintain itself at the lower calorie limit.  When that happens, our weight loss efforts boomerang on us, making our bodies more and more efficient with the fewer calories so that it re-pads our hips and bellies, no matter how little we eat.

On the phsychologically dangerous end of the spectrum, weight-loss dieting can and often does lead to disordered eating, low self esteem, and depression.

Continue reading Why I still believe in health at every size