Home business, home education and health challenges: what makes us tic?

Posts tagged ‘Cystic Fibrosis’

When things don’t go according to plan

Yesterday, I was lucky enough to stumble across this post on Proverbs31.org, talking about being a bad mama, and how we judge ourselves so harshly for what really is, at the heart of it, a universal condition.

In the related resources section there’s a link to a book titled, “I need some help here: when things don’t go according to plan”.

It resonated with me this week.

Just two days ago I was doing a quick life review, and smiling wryly to myself about the “old days”, back when we thought Cystic Fibrosis was the only glitch on our radar, and everything else would be plain sailing if we could avoid that obstacle.

Thank God, we did.

I am grateful every single day that the spectre of CF doesn’t loom large over our lives, and every time either of the girls runs the slightest fever, battles to take a breath, is constipated for more than a day or a kiss on a sweaty forehead leaves a trace of salt on my lips, my blood pressure rises, my heart races, and in seconds flat I’m back in the darkness of that “worst case”. And as I talk myself down from the edge of the cliff and remind myself we’re not riding the thermals above that particular abyss, a fresh wave of gratitude washes over me and I am so very thankful for the health challenges we don’t face.

But things have not gone according to plan.

I look back and laugh at the young and innocent me, with her high hopes and crazy ideals. At what I thought would be my life. That audacious young woman for whom no task was too hard. That lady who was part of a team, a partnership against the trials of this world, characterised by open, honest communication and bucket-loads of laughter. That disciplined adult who saved and invested and lived within her means, always providing for her family’s needs. That tiger mama with her bold cubs and their infinite resourcefulness. Those irrepressible learners I knew I’d breed, who loved reading and maths and acquiring knowledge, and who could instinctively see how all the bits fit together and why it matters.

Sometimes I miss that silly, bright-eyed girl.

(In fact, to my surprise, I saw her again the other  day. I glanced into her eyes and couldn’t place her at all. She was in the mirror, grinning at me with a kind mischief all over her wrinkle-free face. I have no idea how she got there, and it took me a few minutes to remember who she was).

But mostly, I’m too busy with the task at hand to think much about the fun I thought I’d be having. When we imagined CF in our future, we had no compassion for challenged learners. ADD didn’t frighten me. I knew my kids would never have it, and if they did I’d be ready to guide them through it. Dyslexia? Nah. Autism spectrum? No chance. Our problems were potentially much bigger, I reasoned. Or non-existent. There was no middle ground.

I guess motherhood is a great leveller and a teacher of compassion and perspective. And for that, I am grateful.

I now know how even a mild sniffle, if it arrives on the wrong day, can be a burden you hardly feel able to bear. I also know that, surprisingly, you can bear it. It’s possible to survive and even thrive in the midst of the trails – maybe even because of them.

Yes, definitely because of them.

Those hard times that we all face (and we all do) lend an ethereal beauty to even the most mundane aspects of every day, and make our lives precious and beautiful things indeed.

I am so infinitely grateful.

 

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Inhuman

“Everyone talks about the right to choose, but no one discusses the implications of that choice.” – Ann Wagner

Abortion is murder. When we were weighing up the pros and cons of having children despite being CF carriers, our doctors counselled us that abortion was always an option if a pregnancy didn’t go as planned, if we ended up having a sick baby.

Abortion was never an option for us. It should never be an option for anyone. Murder is murder, no matter the age of the victim – and surely it is worse the younger the child is? A child is a living, separate person from conception, and worthy of our complete and total protection.

This video is extremely disturbing, but very important. Please watch it with care, if at all.

http://www.youtube.com/watch?feature=player_embedded&v=uCX-tLqETpk

Why we self-diagnose

This topic is a sensitive one. I don’t mean in any way that doctors don’t know what they’re doing, nor that they don’t server a valuable purpose in society. I need to clarify up front that I am not a doctor, not do I purport to be. I don’t even have the answers for me and my family, so I certainly don’t have the answers for anyone else. What I do have, however, is an enquiring mind, many books, the internet, and a wealth of health-related motivations to figure out what makes us tic.

So, with our slew of ailments, why don’t we spend more time in the doctor’s office? The answer boils down to two simple reasons. First of all, in the absence of a medical aid plan, we’re better supported by excellent nutritional supplements and being careful. This means we avoid smokers, stay away from sick people wherever possible, don’t eat things that make us sick, and don’t engage in dangerous activities. Dull? Perhaps. Safe? Pretty much.

Secondly, I was brought up to distrust doctors. My brother has Cystic Fibrosis, and Papa Bear, Goldilocks and I are all carriers. From an early age we were taught that an expectorant cough syrup would kill our sibling, and a doctor who prescribed this was a quack. We were introduced to the possibility that doctors could be quacks, and encountered proof along the way. This proof included my gluten allergy being misdiagnosed as anorexia (a diagnostic process that wiped out our medical aid and in fact led to an eating disorder, but that’s a subject for another post). My mom’s giant ovarian cyst was labelled hypocondria and my sister’s projectile vomiting was put down to teething. (In fact it was a serious lactose allergy). Goldilocks’ Tourette’s Syndrome was misdiagnosed ADD, and the ADD treatment made Tourette’s worse!

Not having much to spend on medical “professionals”, we prefer to be informed before parting with our cash, making sure we get the best chances for a successful diagnosis in each case.

Without our pick of hundreds of medical professionals attending to our various ailments, I almost invariably turn to my good  friend Google. Now, I’ve been researching my and my family’s health for over twenty years. I know what is relevant to us and what is not. I enter the symptoms and see which causes match our circumstances. Then I choose the easiest, cheapest, safest-sounding solution, and give it a go. If it works, I know I was right. If not, it’s back to the drawing board.

This is a frustrating, slow and time-consuming process. Given the rate at which I charge clients for my time, I don’t know if it’s much more affordable than going to see a doctor. Sometimes, when I feel as though I’ve drained every relevant drop of information from the depths of Google, yet I find myself no closer to a solution, the sense of despair is almost overwhelming. I want to give up, and hand over the reins to someone older and wiser, telling me what to do.

However, I have had more success looking things up than I have being hustled through crowded, germ-infested waiting rooms. I also know my and my family’s bodies much better than I would if we relied on someone else to tell us how we work. I have the satisfaction of not having spent hundreds of rands’ worth of grocery money on medications with as many side effects as, if not more than, the conditions they supposedly relieve. And to tell the truth, I haven’t been able to find a single doctor here who believes in the remotest connection between diet and disease. When I’ve explained our family’s success in living gluten free, I’ve been met with cynical patronising grimaces – without fail. How can I trust my family’s health to that?

At the end of the day, the reason we don’t go to doctors unless we’re beating at death’s door, is because there’d be no point. And so we muddle along, trying to figure things out as we go. Have you had success with your medical practitioner?

Curiouser and curiouser: interesting theories on ADD, migraines and digestive issues.

Goldilocks and Papa Bear both have ADD, apparently. It not much of a surprise – there are long lines of it on both sides of both families, after all. When Papa Bear was in school, there was no such thing as ADD, of course. In those days he was simply told to “apply himself”, and that was that. Nowadays, between research, technology, advanced medication, overcrowded classrooms and curricula that seem to expect way too much from teachers and pupils alike, we have a different solution: medication.

I must admit that before we had the option of home education, we did go the route of medicating the problem. The results were marked and mixed, and not the subject of this post. However, the final result of all of that was to find a different solution. As you know, a large part of the drive behind creating this blog was to document the pathway to that solution, so that I wouldn’t forget it.

First of all, I can say unequivocally that home education is the best possible solution for my little family. It is ideal for our temperaments and thought patterns, as well as (surprisingly) our hectic lifestyles.

But there’s more to education and a lifestyle of learning than simply how you get your basic facts into your head. What with innumerable allergies and intolerances, and a family history of epilepsy, cystic fibrosis, diabetes, cancer and chronic migraines, I’ve always been interested in what we eat and how that affects us. I may have mentioned the wonderful supplements we take, which have done wonders for our health and energy. But even with a completely gluten-free/dairy-free lifestyle, and the world’s best nutritional supplements, we still have ailments. The girls and I all battle with gastric cramps and the attendant pleasures that go with that. We get headaches and blurry vision. Sometimes it’s hard to concentrate, and Papa Bear has the added distraction of being very, very tired all the time.

Furthermore, Goldilocks and I both twitch. In both of us, it started out as chronic, though barely noticeable, blinking. It progressed from there to forehead and cheek twitching and has gained an added dimension: vocal tics. I won’t bore you with the details but, simple put, we make sounds. I’ve been doing it for years so when Goldilocks started I knew what it was. I was disappointed for her as I’d hoped it was a stress-acquired thing in me and in no way genetic, but I could fully understand what she was going through. The sounds she makes resemble throat-clearing, and have become more and more obvious. Eventually one evening Papa Bear lost his temper with her and insisted she stop. Not understanding how she could control it for brief periods, only to be driven to do it even more prominently later, he assumed she was doing it on purpose, albeit subconsciously.

Shocked at his dramatic reaction, I realised it was time to act. I spent most of that night researching “chronic compulsive throat clearing in children“. The results were astounding. I discovered that tics of all sorts, from minor to major motor tics and a wide range of vocal tics which essentially comprise passing air through the nose or mouth in different ways, were all related. These are more prevalent in people with OCD or ADD of even degree. If two or more motor tics and a vocal tic are present, and if these present before 18 years of age, the correct term for the condition, no matter how mild, is Tourettes.

Huh.

I had actually been told this before, but since I didn’t think much of that particular doctor, I’d dismissed it out of hand. Now, however, I was faced with rather more concrete evidence.

Having already booked a doctor’s appointment to investigate my permanent thirst and frequent visits to the bathroom, I decided to bring this issue up there and settle it once and for all. And whaddya know. Tourettes. Both of us. So that was interesting. (The other symptoms appear to be linked to an overdose of coffee rather than anything more sinister, since I am in perfect health in every other way (besides gastric issues) – apparently two to three pots of filter coffee each day is not an acceptable average. Go figure.)

Since then I have been researching the various treatment options for Tourettes. (In short: none). It’s not serious or life threatening. Mild cases don’t even impact your quality of life in any significant way, bar teasing at school – enter Home Education! And of course it has no impact on intellect since the majority of Tourette’s sufferers have above average IQs. Well, I could have told you that :).

I have also been researching ways to perfect the gluten free lifestyle since I do still have a lot of complications with this. For instance, my weight has plateaued and nothing shifts the slightest gram. I have chronically bad skin, which is frustrating given my advanced years. I cramp and bloat and all those other lovely dinner-table topics we don’t like to discuss in huge anonymous fora like these. I stumbled across something called the SCD diet – have you heard of it? Now, that is the topic of a whole post on its own, and this one is already rather long winded, so no more on that here. What fascinated me about it, however, was the link between SCD and autism, with a huge number of parents of autistic children recording amazing results in their children’s health on this diet.

Hmm.

The lady who works for us is a genius and bona fide genetic scientist. She is also dyslexic and mildly OCD, so when she was studying genetics at university, she did a lot of research into the link between OCD, dyslexia, ADD (which her brother has) and genetics. Turns out: there’s a big link. Apparently any damage to chromosome 21 cause these neurological (not psychological) problems. Mild damage causes mild problems (very minor OCD, manageable migraines, etc), while the more damaged the chromosome is, the worse the results, until you get severe autism. This can be caused by birth complications, genetics or vaccines. (I am not a scientist, I’m simply repeating the results of a LOT of reading. Obviously, I may well be wrong here. I’m just saying it’s interesting). But with a family history of ADD, ADHD, OCD, epilepsy, dyslexia, migraines and now Tourettes, it certainly gives one pause for thought. Surely there must be a link?

Even more curious: how can a diet developed specifically for managing digestive issues have such a significant impact on both autism and ADD? I can’t wait to dig deeper and find more because it really is fascinating stuff. I’ll share what I find as I go along (this might be a good time to suspend your membership if this is too dull!).

 

 

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