Not Throwing Out the Baby with the Bathwater OR Holistic Healing

I was sick but had no clue how bad things would get... only joy here!  

In 1997 I was at a difficult point in my life and I told hubs in no uncertain terms that we needed to put together some sort of plan, pronto.  I didn't know what the plan was, but I knew that what was going on with my CFIDS/CFS/ME, fibromyalgia and all the problems stemming from that were totally unacceptable.  I was dying.  I couldn't stand the life-saving measures any longer.  Yes, I had three children, but they were teens and could handle life without me.  After all, I was more a hindrance than an asset to the family.  

But life turns out funny.  I had someone over to come to clean our windows one day (what, so the new wife wouldn't find dirty windows?) and by the end of the day as I dragged myself out of bed to go to the kitchen to settle the bill, the guy said to me, "can I ask you what is wrong with you?"  That was surprising: no one had EVER dared to ask me that, no matter how bad I looked, regardless of the fact that I lived in nightgowns and putting on a robe was my idea of getting dressed up and being ready to go to the Ritz.

I hesitated to tell the man that it was Chronic Fatigue Syndrome (that hated and dreaded title) and fibromyalgia.  Mind you, no one had heard of fibromyalgia at this point (we're talking way pre-commercial days for Lyrica!) and Chronic Fatigue was at its peak as being addressed by the pejorative "Yuppie Flu."  I was sooo tempted to say something else, but couldn't even think of anything else, and besides, I have that bugaboo about lies.  So I told him.

His reaction and words were: "I knew it!"  Turns out that his wife had it also and she was going to a holistic clinic in a city about a 2.5 hour drive from my house.  He really talked up the clinic, describing it as a mom-and-pop 50 year-old operation, with many treatments going on.  (I talk about this in more detail in this post.)  He was practically begging me to go and it was hard to say no.  Furthermore, I had already told hubs that we had to get a new plan because things were not going well - a bit of an understatement.  Maybe Clarence, my guardian angel, had decided to help things along as well. Who knows why these things happen?

But help and opportunity come at the least expected times and in the most unexpected places.  Hubs barely got me to the clinic, I was just that bad off.  They wanted me to stay at their very rudimentary housing for the really sick, but hubs and I both knew that would kill me off right away.  After all, I should have been in the hospital but I just couldn't bear it any longer.  And so we started driving that long drive, once a week, for a day full of different holistic treatments.  Again, if you go to this link you'll get more info.

I really got into the whole alternative medicine thing.  I didn't stop the traditional, however.  I kept seeing my GP each month, kept in touch with my neurologist, and, of course, my rheumy knew what was going on.  They and my friends could see a huge difference and everyone was so happy for me.  After several months *I* started driving to the clinic!  It was truly amazing.  Actually, it was more like an almost-miracle.  (A miracle would have been a cure!)

Well, Thanksgiving rolled around and I am an all-out cook.  I mean, I cook and bake beginning Sunday or Monday before Thanksgiving and keep on rolling till the dinner.  No matter how many or how few people are at our table, it's the same amount of cooking: enough to feed the Red Army, as they used to say!

By Thanksgiving (that's Thursday for you non-American readers) I was really worn out.  Hubs and the kids were trying to get me to go to bed, assuring me that they could handle the rest.  In their dreams!  I did NOT want what my daughter labeled a "Pillsbury Thanksgiving."  I wanted the kind we'd always had in the past, no matter how I felt.  

Finally, I couldn't take the haranguing and said, "OK, but let me just fix this one thing because you'll never get it yourself."  I can't remember what the food thing was, but I remember quite well what followed.  I, somehow, without thinking, picked up the blade of the Cuisinart and it cut well into the tip of my thumb, almost losing said tip!  Honestly, the first thought was "thank goodness that tip didn't come off; it would have ruined" what it was that I was making.  You just can't make this sort of thing up!

OK, OK!  Back to topic: The bleeding couldn't be stopped, so after about 5-10 minutes my daughter rushed me to the ER.  

Now that was a rather interesting experience - for my daughter.  I would ask my daughter to call "Dad" and tell him to put this in the oven now.  Then call again and do this, then that ... you get the picture.  A cell phone would have been sooo nice but I think we had to use the hall phone, a real pain.  I was, let's face it, micro-managing dinner preps from the ER.

Finally, all was fixed up but I needed a tetanus shot.  Well, I wasn't going to have any of that!  I mean, I was now going alternative.  I didn't need that Western medicine nonsense.  (We'll get to the medication part of this in another post!).  The negotiating that went back and forth with the tetanus shot was seemingly forever, with me even calling one of my docs to know if I absolutely needed it.  Harrumph.  Yes, he said I definitely did.

I gave in.

The following Tuesday I arrived at the clinic and everyone kept asking me what happened to my thumb as it WAS an enormous bandage that couldn't exactly go unnoticed.  It finally got tedious having to keep repeating the story but it WAS kind of funny.  After all, fibro brain had struck again!  Type A personality was in full form!  And then I saw the elderly physician who'd been running this clinic for 50 years - treating mostly those with CFIDS and fibro - and went though the whole thing, culminating with how I'd had to get a tetanus shot.  Both he and his wife (a nurse) did such a double-take that it's amazing that they didn't break their (ancient) necks.  

"Irene, are you nuts?  OF COURSE you needed a tetanus shot!!!"  Then I got THEIR take on all the things that could happen without a tetanus shot.

Well blow me over!  Who knew?

So, the moral of this story?  Don't throw out any therapies, procedures, ways of healing.  Use everything you can get your hands on.  

And holistic/alternative/natural medicine doesn't mean you throw out the Western medicine.  All  have good things that help.  We can't be rigid in our thinking.  I haven't used that line about "rigidity" in a while and it bears repeating periodically.  Yep, we can't be rigid in our thinking!  (There you go!) 

And, BTW, you may actually wonder why I named my guardian angel?  (See link for the naming!)  Because he's EARNED it!   He has certainly helped me out of a lot of situations.  I'm so grateful to the window cleaning man who recognized the CFIDS/fibro woman and insisted so earnestly that she/I go to the holistic clinic for their magic.  It WAS magic, indeed, with Western medicine thrown in as well.

As always, hoping everyone's feeling better.  Caio and paka.


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The Perils of Exercise

My mom, who CAN and DOES exercise first thing every single morning without fail.  In her 70's on a 3-week marathon through Europe. *I* couldn't keep up with her!

We've all come across many articles extolling the virtues of aerobic exercise as a treatment for fibromyalgia. Graded exercise treatment is the subject of several studies in patients with CFIDS/ME/CFS in Europe.  Here too, studies show benefit with few adverse effects.  It has become so much like propaganda or politically-correct medicine that one doesn't dare mention the fact that in many severe cases of the DD, exercise is detrimental to one's health.  However, allow me to let you in on the real scoop.  Rheumatologists in the know are aware of the futility of recommending exercise for many of their severely affected patients.  These are the  "train wrecks" who are so far gone that despite conventional treatment, they are still unable to function or endure the pain in their lives, despite all methods recommended and tried.

Exercise doesn't work for everyone, and certainly never worked for me.  In fact, exercise made me much worse and made me feel like a failure.  What was I doing wrong?  Was I not trying hard enough?  These questions haunted me because I am extremely driven and have always been motivated to get better.   

1996-97 was a really rough year. I was dying.  All avenues had been exhausted. I was desperate.  I knew that something had to give.  My life could not go on like this any longer.  I got over the very worst effects of the exercise propaganda.  Then I sought out other treatments (a further post on this turn of events to come!) which were far more successful and which allowed me to do things I never thought I'd be able to do again. These treatments relied heavily on my resting and allowing various healthcare practitioners to treat me and strengthen me so that my body had assistance healing itself and thus I could be more active.  Heck, I was so far gone at this point that we were grasping at any straw that we came across.

The treatments I received were aimed at what had been labeled as "adrenal fatigue" in the 1940's. The clinic's director and founder, a doctor whose experience of over 50 years in the clinic alone, had long ago come to the realization that forcing extremely sick people to exercise is NOT a good idea. This goes for fibro and CFIDS especially.  This clinic was a place where I would estimate that approximately 80% of the patients were fibro's and those with CFIDS.  Furthermore, this was no fancy clinic with marble foyers and state of the art chairs, exam tables, luxurious waiting rooms.  No, it would not be much of an exaggeration to say that it was almost a mom-and-pop operation.  It got results and that's why people came from all over. In this clinic the medical director employed therapists and doctors who specialized in everything from chelation (for heavy metal toxicity) to applied kinesiology,  rolfing, nutritional IV's, acupressure,  acupuncture, homeopathy, reflexology, colonics, diet, counseling (mostly spiritual) and more...you get the idea, I hope!  

I had an epiphany of sorts just recently.  It was a WOW! moment.  At NO time was I - nor any patient - encouraged to exercise!  I  - as well as many others - was too sick.  In fact six months into treatments, the Vietnamese-born acupressurist, a man of few words who had spent six years in a North Vietnamese POW prison, suddenly said to me in a quiet voice, "First time I meet you. I never see someone who dead but still alive."  Oh, he was GOOD.  Sooo very good at what he did.

It urks me: how can the medical establishment possibly push exercise on their sickest patients?  I bring up the "holistic" clinic because it was successful with MANY patients, including me.  It took a year of hard work (to be described in future postings)  but I went from "dead" to being healthy enough to fly to Europe to visit my daughter.  We now know that many patients with fibro and CFIDS have co-morbidities like growth hormone deficiency, DHEA deficiency, electrolyte abnormalities, myoclonus, insomnia, autonomic nervous system dysfunction leading to orthostatic hypotention and a host of other problems.  Are the advocates of exercise crazy?  Unless you take into account the uniqueness of each patient, a blanket recommendation for exercise leads to disaster.

My health improved (understatement of my life, perhaps) and my other doctors who were trained in and practiced western medicine were amazed at my progress.  Shocked, in fact.  To paraphrase my GP on one monthly visit, for example, he said, "I don't care if they tell you to wear cow manure on your head.  It's working!  Keep it up!" 

This post is an just an introduction to further discussions on treatments for fibro and CFIDS and what to avoid.

And because I know that many are wondering why in the world am I still bedridden?  The clinic fell apart once the elderly (read "ancient") head of the place was finally forced to retire due to old age.  I mourn that loss. His clinic saved my life.  I could use that now, especially when I often feel like a failure because I can't exercise nor do a tenth of the things that are "promoted" at this point in time by the current fibro/CFIDS "fads."  Like the weather in Seattle, in my heart I know that if I wait a little while, what is pushed now will become obsolete, only to return, go away, return, over and over again ad nauseum.

As always, I hope all are doing their best, only better.  Ciao and paka! 

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