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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Monday, April 8, 2013

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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  1. The only alternative medicine I've used is acupuncture and 1200 mg daily of Mucinex (guaifenesin). I used acupuncture for the nerve damage and Fibro pain as well as the migraines. It helped but, each session produced results that lasted only a few days. I couldn't afford to go more than once every 2 weeks. I might try again soon.

    My therapist taught me self-hypnosis which I combine with meditation I learned on a PBS special. I was shocked when I was able to reduce the severity of a migraine this past November by using that combination. My therapist said the goal is to be able to put myself in that very relaxed state no matter where I am.

    I do other things like avoiding sugar and cruddy carbs because sugar causes inflammation in the body (it also does awful things to your skin - my 'youthful' skin being one of the only things Fibro hasn't wrecked). I don't drink coffee - mostly because it feels like my heart will explode from the caffeine and because I'm hypoglycemic. Coffee is great for diabetics because it lowers blood sugar; for hypoglycemics, it's a form of torture.

    I've thrown toxic people out of my life and done so feeling no guilt. I've received push-back on that; I think mostly because I was so compliant and was the peace-maker for so long. But, once you're blessed with a chronic illness, you have to make your mental and physical health the #1 priority.

    I think we should be open to trying almost anything after doing due diligence. We have to become researchers and advocates for ourselves. The one thing I abhor is quackery because 1) it's a waste of money; 2) it's offensive for anyone to think our illnesses have a quick fix; and 3) it's reprehensible to take advantage of ill people desperate for help.

    1. I overlooked answering this post somehow. (When in hospital?) So sorry, Melissa.

      Open-mindedness is what I like - as do you. It's never a good thing to categorically throw something out. Rigid thinking shouldn't be on neither the holistic people's side, nor the "Western" people's side, I agree. xx