Life goes On

Well, I feel like I've dropped the ball.  But really...not really.

We got word this week, officially, that our son is intellectually disabled.  We've certainly known since before he was two that there were points of concern.  His gross motor skills were delayed as was his speech.  This can happen.  Friends of ours have a son with a similar combination of delays who went on to be very accomplished.

It would seem that will not be the case with our son.  At 7 he is still working at the level of a 4-year-old.

So now my quest for health, which is far from complete, will branch out into a quest to assist our son in becoming everything he can be.

It is interesting how this worked out.  If we'd received this information last year, I would have been unable to process it fully, or at least as quickly.  I would have been less able to do anything about it.  I remember sitting in on our son's IPRC (Identification, Placement and Review Committee) meeting last year, having brought in some help, feeling like I could barely follow what was happening.  I was so foggy.  I am not sure I could actually sign the legal document that is the IPRC report.  So I took it home and reviewed it.

As it is, our son's diagnosis has come at the end of a year of hard work on my part, trying to get my brain functional again.  It also comes at a point where I am rather disenchanted with 'systems'...medical, educational...but mostly medical, because of what I've learned is or isn't happening and how much suffering and loss of productivity is resulting from this.

It would seem that the upcoming year will be another year of hard work and discovery.  We are blessed to have in our circle of friends and family several people with expertise in areas of education and/or working with the disabled.  Alread the ideas and opinions are flowing thick and fast.  This is good.  I know how the 'rabbit trails' can work.  You start with an idea to investigate and as you do, other ideas surface until you forge a path that seems to make sense.

I am not coming to this totally unprepared.  I have been reminded that our son's condition is not an illness in need of a cure.  It is a lifelong conditon that must be worked around, accomodated and lived to the fullest.  Only time will show us just what that will mean for our son.

Already, it has been suggested that we investigate Gardner's work on multiple intelligences.  I believe this is valid.  Our son's testing did not show any particular strengths or weaknesses, but did she test his musicality?  This is one thing in which our son seems very strong.  He also has a 'thing' for colours and identifies them more easily than he identifies common objects, it seems to me. 

I want to check a couple of medical possibilities.  Thyroid, of course.  I am very sensitive to this, having discovered what I have about my own health.  In the process I have also learned just how devastating and mulifaceted in its effects a thyroid malfunction can be.  Two areas strongly affected are speech and intellect.  I also want to try again to get a proper hearing test.  We have tried before, but our son was not cooperative.

So, my little buddy will be training us as advocates.  I've been learning to be an advocate for a while now, for myself.  I guess now it's time to try this for someone else.

For our son, advocacy may be of a particular importance as our son is not a 'behavioural'.  He is a nice kid, reasonably polite with no particular attentions span trouble.  He will be easy to pass over when it comes time to allot classroom assistance.  But he will not learn without that assistance. 

My Story Part Three...

Today's writing comes with a caveat.  I seem to have fallen into a "flare-up".  I woke up this morning with a bit of a backache, and by noon I was in bed.  I rarely go to bed during the day.  Not that I don't want too...but I try not to do anything that will endanger my precious sleep at night.

So today was not a good day.  My mind is not at its best either, but I will try to be coherent!

My friend the former nursing student had been dealing with health issues of her own for pretty much the entire time I'd known her.  By the time I was ready to start seriously figuring out what was wrong with myself, she had her condition under good control.  She had done this pretty much on her own and had a lot of very good information and, dare I say, advice to offer.

We had discussed low-carbohydrate diets at length.  This had done her a world of good.  Although I had never been as strict as she is, I did lose weight while eating low-carb.   So maybe that was something...but then she suggested I look into low-dose naltrexone. 

At its full dosage, naltrexone is a drug used to treat substance addiction.  At lower dosages, usually 4.5 mg taken at night, it causes suppression of endorphins, which are usually produced by the brain in the early hours of the morning.  Because of the suppression, the body reacts by producing more of those precious endorphins, which can result in an increased  sense of well-being, reduction in pain and other good things like regulation of the immune system.  It has also been used by people with MS and cancer with good effect.  For my friend, after the initial settling in period, it improved her sleep.

Naltrexone is a prescription drug, but the low-dose usage is considered "off label" so it can be hard to get a prescription for it.  I went to my doctor's appointment armed with information and a meek attitude.  I saw a brand-new doctor who said she'd look into it.  That was more than I'd hoped.  When she called me back the next day to tell me a prescription was waiting for me, I was ecstatic. 

So, what did I notice?  It did make my sleep a bit more restful.  I did not have to deal with sleep disturbance which is common in the first week of use.  I was still on sleep meds.  If my sleep was disturbed by the ldn (low dose naltrexone) I wouldn't likely have noticed.  I did have some interesting dreams for a couple of days!

My depression lifted a bit, and energy got a little better but over-all I did not notice a great benefit.  But I persisted.

Something else I picked up in the process of reading.  The antidepressant I was on had the side effect of disturbing sleep, and causing dry eyes and mouth.  With doc's permission, I reduced the dosage by half.  My mood did not deteriorate.  My sleep improved a touch more, and my mouth no longer felt like I had cotton in it.

Researching ldn led me down another rabbit trail...iodine.  What really caught my interest here was the connection between iodine and thyroid...and nearly everything else.  I had been using non-iodized salt, and less of that, for a long time.  We don't eat a lot of fish, so being iodine deficient was a good possibility.  And I now had good evidence (namely many iodine eaters!) that iodine was quite safe and very necessary.  So last December, I started taking Lugol's 5% iodine solution as part of a protocol.  I am currently taking about 100mg/day (and yes, that is milligrams) and am happy to be doing so.  I definitely feel better on it than off!

However, iodine had now led me to another rabbit trail...thyroid and adrenals.  Notice how thyroid keeps resurfacing?

Iodine is critical in proper thyroid functioning.  If one's thyroid has not been functioning well, eventually other things suffer.  The body is under stress because thyroid hormone is used by most parts of the body.  Without that hormone, the  body tries to compensate.  This involved the hypothalamus-pituitary-adrenal (HPA) axis, a complex feedback loop that I picture as being like the body's transmission.  I won't get into the details too much.  There is a common name...Adrenal Fatigue.  Flash back to my not handling stress?  Well now I was getting the picture as to why.

My latest doctor, a first-year resident, was encouraging.  When I first saw him, he asked me to come back to him (as opposed to the other doctors in the clinic) as he wanted to help me "figure this out".  THAT was music to my ears.  My first request from him was a refill on my ldn prescription.  I also asked to get the prescription for the 50mg tablets so I could dissolve them myself to make up the 4.5mg dosage.  I got the prescription.  He also ordered a serum cortisol bloodtest (which I later found was not very accurate, but I sure appreciated the cooperation).  When I asked for a more detailed saliva cortisol test, he said he'd do whatever he could to see that I got it.  Turns out that he couldn''t help. Our medical system doesn't do saliva cortisol testing.  So I ordered it myself.  Also, he didn't blanch when I told him I was taking iodine supplements.

In the process of getting ready to take the cortisol test, I was counselled to stop the anti-depressant, sleeping pill, and ldn, which I did.  To my surprise, my sleep was not as horrendous as I'd expected.  Perhaps it was because I'd also completely stopped the anti-depressant?  Who knows?

My test results showed that I had high cortisol.  This was indicative of early adrenal fatigue.  This was a surprise as I expected I`d have low cortisol.  Perhaps my adrenals were not as `shot` as I`d thought.  Mind you I`d also been taking unrefined sea salt and large amounts of vitamin C daily, as part of the iodine protocol.  Both of these are also known to assist in adrenal health.  It did not take too long for rhodiola, an adaptogen, to make my daily average temperatures stable.  But they were still low.

Eventually I asked for another TSH test, along with Free T3 and Free T4.  The "frees" measure the amount of thyroid hormone available to be used by the thyroid gland, as opposed to the total amount in the body which may be bound and unavailable.

So begins part four...

My Story so Far...part 2

I went back in to the doctor's.  This time, I was still not sleeping.  In fact, I was now able to take lengthy bike rides, early in the day, and have my sleep that night be WORSE than usual.  Who does this? 

The specialist who had finally diagnosed my osteoarthritis, just four months before both my hips were replaced in 2008, had told me that if I lost weight (50 pounds enough for you?) and exercised (daily walks and weekly 40 km bike rides?) that I would feel "fantastic".  I should have gotten it in writing.  I seemed to be doing everything correctly, but I was not getting better.  I was getting worse.  To the insomnia, I had added tremours, near agoraphobia, lack of sociability, intense spells of irrational anger, and what felt like blood sugar swings.

I was fnally sent for a sleep-lab which said that they couldn't see anything wrong.  I had 85% sleep efficiency (remember, I was on two prescription sleep meds!).  I am not sure what that means, but if my math is correct, that means in attempting to sleep for 8 hours, I was actually sleeping only 7.  That doesn't sound too bad, but I was waking up tired.  I was waking up in the middle of the night, frequently feeling angry.  I would pick fights at night that I would not have bothered with at all during the day.  And my brain never seemed to shut down. 

Before I was sent home in the morning, the nurse observing my sleep lab told me that  two things jumped out at her.  I was on a LOT of sleeping meds.  One seemed to interfere with my breathing.  She suggested that I start looking elsewhere for answers...endocrinology perhaps?

I love nurses.  It was a nurse who finally pushed my GP to send me to yet another specialist when I was at the point where I couldn't walk.

It was a nurse who got me started down the path that may finally be getting my health mysteries sorted out.

It was a friend and former nursing student who gave me some valuable leads which led to the 'rabbit trails' that have gotten me where I am.

My Story (part 1)

Yesterday, I read an article by Cindi S.

 Most of it could have been written by me.

I first asked my doctor to check my thyroid  function when I was not yet 20 years old.  That's nearly 30 years ago.  My symptoms then were thyroid enlargement, depression, overweight, swollen ankles, heat intolerance, low body temperature, cold hands and feet and fatigue.  My doctor at the time said he'd check, but I owed him chocolate chip cookies when it came back normal.  Which it did.

What is normal?  I don't know which test or tests my doctor used.  I suspect he used the TSH (thyroid stimulating hormone) blood test.  It was still fairly new at the time and was (and is, in many circles) considered the 'gold standard' for guaging thyroid function.  Since that time, the American Association of Clinical Endocrinologists (AACE) effectively lowered the range of 'normal', although many labs still use 5 as the upper limit of "normal" anyway.  Of course that was in the US.  I am in Canada.  But maybe I would have scored a hypothyroid lab test then, if the lower range had been in effect.  But who was I to argue with a lab test?

I got married a few years later.  All my symptoms persisted.  The births of all but one of my children were followed by post-partum depression.  My husband tends to be a go-getter...I most definitely was not.  Increasingly, I found I did not handle stress well.  In 2001, I 'finally' began taking an anti-depressant.  Eventually, I was also diagnosed with fibromyalgia (joint pain, stultifying fatigue, insomnia).  My skin and hair got very dry.  My nails split and eventually my hair started falling out periodically.  I was dizzy and frequently couldn't finish a sentence I'd started.

At this point, my thyroid was tested again, and again came back 'normal'...although it was high-normal.  The resident (and this man is practicing somewhere in Ontario!) told me, in effect, that I was a bored, middle-aged housewife who needed to get out and do something to take my mind off of myself.  I was so fogged in that I was at the end of the hallway before the urge to clobber him came to me.  I wanted to cry.

Before the "fibromyalgia" struck me, I had been the volunteer queen.  I had many, perhaps too many, activities I enjoyed doing.  I had people I enjoyed seeing.  At the  point where this doctor met me, I was recovering from major surgery, and had stopped all my activities so that what energy I had I used for my family.  When you are severely fatigued, you may fall into a state of anhedonia...the inability to take pleasure in anything.  That was pretty much where I was at.  Had it not been for my family, I would not have gotten out of bed in the morning...but the condition would also have kept me from sleeping.  Oh...I was on TWO prescription sleeping pills at this point, too.

I managed to get enough thoughts together to realize that that particular doctor was a jerk. 

Around  the same time though, I had been given a chance to learn a new and interesting skill, with the potential for a good income from it.  I could do this work from home, which was an added bonus because it meant I didn't have to use my precious and scarce energy to leave the house.  It would allow me to get off of disability!

That is when I realized just how bad things had gotten.  My goldfish-memory span (three seconds!) and inability to handle stress made it impossible to handle what I saw could be a very good occupation for me.  I crashed and burned.  The coup de grace was my 'boss' telling me I'd been slow to learn a particular aspect.  If I could have bellowed, I would have.  NO ONE HAS EVER CALLED ME A SLOW LEARNER!  But he was correct.  I had been unable to figure out the task he gave me.

I had to do something.

But right now, I need to take my temperature.  More in my next post.

The First Step

My intent for this blog is to give myself permission to vent a little at the system that is in place which seems intent on keeping some of us ill. 

I also hope that by sharing my continuing story, I may be able to help someone else to figure out his, or more likely her, health problems faster than I have done.

I will be posting my experiences, but also information I've gathered that has been helpful.  I may also, from time to time, take aim at "information" that is NOT helpful.

Join me!   I will welcome considerate commentary and gentle correction.  I also hope to hear the stories of others.