About Me

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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.

Tuesday, April 24, 2012

Another Reason Your Diet May Not Be Working?

The summer before my body stopped producing HGH.

Do you have Fibromyalgia and happen to also have a big belly?  Well today's post may help - or at the very least open your eyes to an avenue you may have not yet considered.  

Today I'd like to touch upon a health problem that is often seen in those who have CFIDS/ME and Fibromyalgia, but often WHY this problem is happening seem to escape explanation.  A rather large subject, I'd like to simply start an intro into this area and explore it more in the future, if necessary.  Sometimes I feel as if I'm opening a can of worms when I start to address a subject: today is certainly one of those days.

It's that of the big belly that is so often seen in patients with CFIDS/ME and Fibromyalgia.  The pituitary part of the brain is broken, to put it simply and succinctly.  I'm going to give you MY story and hope that you realize that this is just one person's experience. (Oh, how I hate all these disclaimers!  They make me sound so SERIOUS, whereas I do prefer laughing about the ridiculousness of my situation.)  On the other hand, aspects of this may help you reach some conclusions in your own cases.

I've been embarrassingly frank about the nature of my skin in past posts.  Yes, I get hives and all too often have all sorts of skin sensitivities, but like my mom and both her parents, I've been blessed in the wrinkles department and most especially in the healing-of-the-skin department.

I have numerous stories of scratches, scrapes, cuts and burns over the years which should have left scars but didn't.  Of course, I do have scars, but not as many as one would think, given the escapades of my tomboyish childhood.  

But to move this story along: one day, in particular, I was told by over-protective hubby that I wasn't to get out of bed that day because my face told him that it would be a day when I'd be vulnerable to accidents, falls, whatever.  As I've written before, my family can usually read how I feel much more accurately than I can.  To me, basically, each day is pretty cruddy, health-wise, and I have to learn to rely on others' observations.  On this particular morning, I'd evidently not learned that lesson.  Later that morning, feeling as if I just had to get out of my skin or I would go crazy, I decided to make myself a cup of tea.  Granted, I had to go downstairs for this, but I honestly thought I could handle it.  

As I opened the cabinet with all the "tea necessities," the little Cuisinart coffee grinder fell onto my head with the sharp blade slicing my forehead open, blood suddenly squirting everywhere.  I finally called hubby - and how much I didn't want to, you can only imagine, since I had been "warned" that bad things would befall me (groan: a pun) if I got out of bed - and he said he'd take me to the ER.  And thus an argument ensued. I was simply in no shape to go to the ER, no matter what.  By the time hubby arrived home and saw the mess, he was really insistent that I needed that area stitched, but I had to make him understand that I didn't care about the darn scar which would, undoubtedly, form smack in the middle of my forehead.  I simply could not move or have anyone touch me.  Hubby said he'd call an ambulance.  I told him that if the house were on fire, I literally would not be able to move.  I was just feeling that sick, weak, nauseated, and a myriad of symptoms that I can't even describe.

Hubby did the best he could with sticking on a few steristrips and a couple of days later, when I actually cared enough to think of how I'd look for the rest of my life, I looked at my arsenal of healing things and decided to try the lavender essential oil I had.   That summer, many people (doctors) shook their heads when they saw my "wound" (I mean it was right there on my face, hard to ignore!) and everyone said how stupid I was not to have gone to the ER and had a plastics guy fix it up.  This was said to my face at parties...I can't even imagine what was said behind my back!  Even then, the consensus went, I'd have a rather nasty scar.

Well, the joke was on them: my forehead healed wonderfully, thanks to my Bulyga and Lisovsky genes. There was not even a TRACE of a scar, which even by my own standards should been a mess.  Essential lavender oil started getting a reputation in some circles around town, as it rightfully should have.

So, imagine how surprised I was a few years later when each time I turned around I'd either burn myself taking Christmas cookies out of the oven, scratch myself moving a piece of furniture away from a certain spot in order to vacuum, or cut myself doing some silly bit of prep work in the kitchen.  Suddenly scars were forming that simply wouldn't go away.  More than one friend asked why the heck wasn't I using that "voodoo" stuff I'd used in the past.  When I realized it was the lavender oil they were talking about, I didn't know what to say.  They were right: why WASN'T the lavender working?

But the incident that really hit it home for me was the one in the garden.  I was putting in annuals, a very simple job even I could handle.  After the flowers were all in, it was such a great feeling.  The garden was going to look pretty good this year, I felt.  A couple of days later, I noticed a scraped area on the top of my foot, the area above the arch.  I looked and couldn't figure out what the heck was going on and was puzzled. That area had been a bit red after gardening, but it shouldn't have scabbed over...it should simply have disappeared.  It was a result of my kneeing down at times and the grass rubbing against my foot as I scooted along with those annuals.

Because the area wouldn't heal AT ALL, I pointed it out to my doctor a few weeks later during my monthly visit.  He didn't think much of it at the time but I wasn't letting it go.  I had to defend my ancestors' genes, after all.  Much was at stake!  I reminded my GP how the lavender had helped during that unfortunate forehead incident and he more or less did see that it was an unusual scenario for me but still thought I was a bit "over concerned."  The following month, my foot looked no better.   Now, I really wanted answers. 

More cuts, burns, scratches occurred - naturally, since I'm not the most "stable" person in the world.  Hubby likes to say I've fallen in all the great cities of Europe and it's true.  We can now even add Australia to the continent count.  Back then, I was horrified to see what the heck was happening to my skin and was getting royally upset.  

FINALLY, the time came to have blood work done, a relatively regular occurrence since there are certain meds that I'm on which can have nasty side-effects and also because we always find some sorts of goodies to address.  My HGH level was taken because I had suddenly started exhibiting a huge belly. Pregnant I was not: the emergency hysterectomy performed fifteen years before insured that. 

Well, lo and behold: my Human Growth Hormone (HGH) byproduct (IGF-1) was at the level of a 98-year old woman, whereas I was only in my late 40's.  Essentially, I was dying as organs became weaker, including my heart, my lungs, and so forth.

Yes, I'd become so weak that I was now completely bedridden.  Another test was run, and yes siree, there was no mistake.  My body had basically stopped producing HGH.  I had to be taken to Pittsburgh to a specific hospital to have "the gold standard" test done on me: the arginine test. If you fell asleep when the IV arginine hit your system, that suggested that you had no Human Growth Hormone being made by your body. I, the insomniac whose insomnia is so severe that it's actually been labeled by one neurologist as being "malignant," fell asleep the second that arginine hit my system and proceeded to sleep it off for the next few days. What bliss!  Don't I wish I had access to some arginine most of my life?

It took almost two years from the day we realized that I had an HGH problem to the day I finally started taking the HGH.   My hubby would call the insurance company, the government, the company that made the HGH and would beg to pay for it himself until the insurance company could get its act together for me to start with my daily shots but was refused each way he turned, as I got progressively worse and even ended up in the hospital.  And the scary part was that each day we were all afraid that I would soon be dead.  My organs were barely making it.  I was now at about the "age" of an 109-year old woman.  There were many long and funny stories around this period of my life which can be addressed at some other time, but only funny now so many years later when time has taken away the sting and we all know the ending.  One "cute" story: having to be carried out of the auditorium as my daughter's NYU class came in for their graduation.  All I kept thinking was, "thank God this is not her wedding!"

Eventually I was given the OK by all agencies involved.  But then the spy vs. spy scenario started.  You see, HGH is not something that you can simply pick up at your local CVS pharmacy.  No, an APPOINTMENT with a courier is made each month for the delivery and it must also be confirmed each month as to time and place. I love envisioning my hubby behind some dumpster making the illicit trade-off of the refrigerated HGH.

In the spirit of shortness, since I really do want to make my posts much shorter, I'll just make a few points.

First, it took two years for my body to recover to the point where the proper amount of HGH was reflected in my body for my age group.  They were an extremely rough two years, to put it mildly.

Second, I was extremely lucky.  My blood turns cold when I  realize that HGH was approved for use in adults only two years before we realized that I'd need HGH.  Had my body stopped producing it just a few years earlier, I'm afraid I'd have been dead.

Third, I suffered much irreparable damage.  Two discs totally dissolved and the bottom of my spine is gone also, among other "goodies."  My cholesterol count is really off and because I can't get it under control, I've given up.  It doesn't seem to matter what I eat: in fact, when I adhered to a heart smart diet, my cholesterol went up, when I ate whatever I felt like eating, it went down, though still at a totally unacceptable level by anyone's standards.

Four, I must see an endocrinologist about this and not all endocrinologists are built the same, evidently. That is, not all endocrinologists are "inclined" towards prescribing patients HGH.  Don't ask why since I've yet to figure out what THAT's all about.  The tests are there to show that I clearly need it.  Why only some endocrinologists can or will prescribe is an issue I'll never be privy enough to answer.  Worries of governmental agencies coming in and auditing the doctor?  I have no idea.  It's an extremely controlled protocol and has very rigid criteria. I live in fear of what happens to me as a patient when the very senior endocrinologist I go to finally DOES retire.  He's only working because he has so many patients who are dependent on him.  His is not an easy life when half his patients are brittle diabetics who, of course, often need to make middle of the night emergency calls.

Five: What is the insurance max in my case?  The medicines I take are costing us a bundle, even with insurance.  Add in the HGH and it's really a huge cost.  What IS my cap?  

Six: where the heck is this stuff coming from?  I don't even want to know and have purposely stayed away from all in regards to this part of my care.  I literally cannot live without the HGH and I don't want to know what problems may lie ahead of me because of my having to get daily injections.  Yes, close monitoring is done to make sure that I am getting only the amount that occurs in a woman my age, but there are always complications to everything a patient takes, and I'm sure that this is even more so in a case such as mine, given the bucket load of problems I already have.

And finally, what scares the crud out of me?  That for some "funny" reason, arginine, the amino acid which they inject into you for the "gold standard test" to establish if you are severely HGH deficient, is suddenly, mysteriously disappearing!  

To end the story (and hopefully I'll still be around, the pharma's not sending anyone out to bump me off because my mouth is too big) -  I don't heal as well as I used to before I ran out of my own ability to make HGH.  I'm alive, and yes, I realize I'm older, but really, I know where I should be and I'm not there.

I also worry about the people out there with growth hormone insufficiencies.   I so hate that word, "insufficiencies," since if you're making the hormone at all, you are then not ok'd for the manufactured hormones and your goose, it could be said, has been cooked.

If you have a belly that makes you wonder how you could possibly be pregnant or if you suddenly start getting scars from incidents that you normally wouldn't scar from, check into your HGH level. 

But I'm glad to report that despite all, including my son very inadvertently jinxing me by calling me "the weird mom with no wrinkles," I have not disgraced those ancestors of mine and that THAT part of me is doing OK: the Bulyga's and the Lisovsky's should be happy I still have so few wrinkles!  (Knock on wood and a tphoo! tphoo! tphoo!)


  1. Thanks, Irene! This one was also very good, Future Best Seller in bookstores!

    1. Thanks, Leo! These medical ones are the hardest to write, especially when I have to go to sources to confirm exactly what was done. Luckily my endocrinologist's office was able to verify some of the details.
      It's great to get positive feedback! Appreciate it!

  2. So, HGH is simply checked through a blood test? Gonna have to look into this... that is, unless my health insurance doesn't cover such a test. Then again, maybe it is not too expensive. Now I have to also ask my Metagenics distributor if she thinks there are safe HGH supplements, or safe supplements that help the HGH levels. Thanks for this post, Irene! I invite you to follow my blog! :-)


    1. Good luck, Judy! Thanks for stopping by. I looked at your blog and enjoyed it. Very interesting about the calcium and so much truth there!

  3. Irene, thank you so much for writing, fighting, living, breathing... I've learned a lot from your blog. Upon return I would definitely check my HGH. I am always amazed at your mastery of writing: after a few minutes of reading I am fully engrossed in a slowly unfolding picture... I enjoy it immensly!

    1. Thank you, Mariula! I can't tell you how much I love hearing those words...you're so kind! I'm afraid my posts are a bit more like short stories than the normal post length and what's scary is that I really AM trying to keeping them shorter!

      Let me know how it goes with the HGH testing. Will miss hearing from you while you're away. Try to keep in touch!