Why A Daily Pitocin Shot?

Please get me some Pit - and fast!

Recently I wrote about the three shots I need daily.  I promised I'd explain why I needed pitocin and here I am, ready to deliver.  (Ha! A pun as you'll see shortly!)

I'm not completely sure how it was that I stumbled upon this bit of hope to make my days marginally better. But when I did read about it, it made complete and total sense.  There is, however and unfortunately, no way to measure one's pitocin level - or not routinely.  But my medical history - as far back as 1979 - convinced me that this would be something my body needed.  

What IS pitocin and why is it needed?  Pitocin is actually oxytocin when it's in a woman's body. It's a neuromodulator in the brain - and don't most of us with CFIDS and fibro have trouble with neuro-anything? Back in 1997ish, I'd read that really there are only a few known reasons for oxytocin but they are mighty big ones!   As many women already know - the hard way -oxytocon is needed in order to push out a baby during labor and then to make the uterus contract after delivery of that baby.  Without that contraction, a woman will bleed out.  It's also believed to help maternal bonding and breastfeeding.  Because of recent research, oxytocin has even been dubbed the "love hormone."  However, we won't get into that part today.  (In researching parts of the oxytocin story for this post, I came across other, updated reasons that might show the importance of oxytocin in other areas, but that'll have to wait for another post, my lovelies!)

Back to 1997ish.  My brain went Bingo! at reading about pitocin's (oxytocin's) role in childbirth.  After all, my thinking went, child #1 was a week late. Furthermore, my uterus didn't contract at all and within seconds I gushed out half my blood volume, almost dying in the process.  Thankfully, we had one of the best ObGyns in NYC, but I remember him screaming for more IV pitocin as my body went into convulsions and the bleeding wouldn't stop.  Everyone in the delivery room held me down so that he could stitch away at me and thus save my life, screaming also, "keep her down! Keep her down! Why is she still jerking?  More pit!  Keep her down!" in a voice no one ever wants to hear.  Yep. I had a 10-pound wonder and it made me laugh to no end that my ObGyn went around the university hospital center making sure everyone gave my daughter a good look at the nursery.  She was, if I may say, indeed splendid.

Child #2 was a whopping three weeks late and showed no signs of ever wanting to leave a perfectly happy and comfie home.  Lest you wonder if I had my due dates correct, child #2 came out looking like an old man, shriveled with long nails and lots of hair, having weighed in at 9 lbs, but having been in my belly at 10 lbs. - having lost substantial weight because the placenta had become very weak from "old age" and wasn't delivering blood efficently to the baby.  It horrified my new ObGyn (we had moved) because I did indeed have my dates right and he had "sort of" doubted me.  Child #3 went two weeks late and having learned the lesson from child #2, labor was again induced.  And pitocin was further needed after delivery, in order for my uterus to contract, yet again.  (Just for your info: that child was also a 10 lb. wonder - see the picture above!)

Adding to all the complications, child #1 was a mid-forceps delivery and child #3 was a vacuum extraction.

So, did it not make sense that I had a bit of a pitocin problem?  I mean, the handwriting was on the wall - how much clearer could it be?

Evidently not clear enough.  My GP and rheumy/immunologist were reluctant to go the pitocin route.  They were, understandably, concerned about going to such drastic measures when there was no real literature out there about pitocin and helping CFIDS/ME/CFS and fibromyalgia.  But after two years of debates (yes, 2 years!) they gave in and the grand experiment started.

Within minutes of getting my first injection I noticed that my eyesight was better.  For once, my bad memory came in handy.  I was reading a book when that first shot was given - I'm a complete chicken when it comes to needles and preferred not to watch the thing going in.  About five minutes later I yelled out to hubs, who was on his way out the door, "hey, I can see better!  What's that all about?"

I'd already forgotten that I'd had a shot.  Groan!  But I also forgot that I'd read that if you do indeed have a pitocin deficiency, it should register with your eyesight within 10 minutes.  That was the acid test!

Well, like the kids say, duh!  Good thing hubs doesn't suffer from a poor memory - knock on wood and a tphoo! tphoo! tphoo!

So what's this thing with eyesight all about?  What we have, according to my rheumy, is a problem of the brain's inability to correctly interpret the signals from the eyes.  Who knew?

So, there you have it: I've had these pitocin shots daily since approximately 1998.  I consider it a good move. My overall plan is that if I can improve my life 1% here, 2% there, .5% in yet another area, pretty soon those numbers add up to what is, for me, a significant number, one that makes life more bearable.  So, there you go.  The pitocin is helping in some indefinable way, more than just the eyesight.  I consider the improved eyesight to be just the tip of the iceberg.

And my brain, which is always thinking in very frightening ways, can't help but wonder, is this a reason perhaps why women get CFIDS and fibro more often than men?  We all pretty much agree that what is known as CFIDS and fibro may indeed be different illnesses but at the moment put under the same umbrella.  Who knows where MY subgroup will end up?  Food for thought?

As always, I hope everyone's doing their best, only better!  Ciao and paka.


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Friday Tidbits: My Three Daily Shots

Needles: I thoroughly hate them - I have a true phobia. I think that the Guy Upstairs has a very funny sense of humor because I need three shots daily. Or, perhaps, I lived a very strange sort of existence in a former life and my punishment is having to get so many shots in this lifetime.

People seem to be curious about medications our fellow sick ones take and I'm private about some things, yet share others.  A lot also has to do with how much I think others might want to hear, preferring not to bore people to death.  But it's Friday, I'm feeling cruddy with all that's going on, still with the nausea, recovering somewhat with the swelling and bloating, pain, you-know-the-drill, much of it still where I was last week.  I've had a few other problems that are getting to me but I'm still sitting on the fence as to whether anyone would want to hear about it or not.  Other things are driving me nuts: I'm trying to hold out and see if there is any rhyme or reason - hint: rashes and hives amongst other annoyances.

Hubs is out of town for a long weekend, I'm forced to give myself my own shots and so I finally decided I'd "go there" - that is, tell you about the three shots I dread so much that everyone but in the family but myself knows how to administer.  I should say that I'm so bad about needles that back in the day when the only way to get over a migraine - besides waiting it out - was a shot, my 13-years old daughter came to her dad and said, "it's about time you teach me how to give mom her migraine shot. You're not always around to do it, you know."  Or words to that effect.  That summer, bossy daughter and I were going to fly to Oxford and she wanted to make sure I was covered.  Have I mentioned lately that the girl's got guts?

Luckily, needles are not the only way to go in order to treat migraines any longer.  Those little pills are such a convenience!  I'm so bad that I prefer going through life with migraines than have a shot - or the occasional DHE-45 IV given over an extended period of time in the ER with hit-and-miss results.  See how ancient I am? It's as if I lived in the age before antibiotics were invented!  Not quite, but almost.

But the Guy Upstairs still has His joke with me on a daily basis with:

• Vitamin B-12  Yes, I could go with the pill form, even the sublingual form, but that didn't work for me.  Despite getting B-12 the way the rest of us get it, back in 1997 my test results showed that suddenly I was extremely deficient in B-12.  In fact, I was low despite the IV nutritionals I was getting weekly at the holistic clinic I went to over two hours away by car, each week for a year.  The funny thing - not haha but strange - is that it takes two years for your body to make up the deficiency. Therefore, though the tests may come back with your level of B-12 - registering in normal amounts - and though the blood tests may reassure you, guess what!  Your cellular level of B-12 may still be low.  I now get a daily shot of B-12 and do get tested periodically to make sure that my levels are in the normal range, not too high, not too low.

• Pitocin   I'm sure many out there with Chronic Fatigue and Immune Dysfunction Syndrome (CFS/ME), fibromyalgia and many other autoimmune illnesses have problems with vision changing day-to-day and even hour-to-hour.  But it's not a vision problem, per se.  Instead, it's the brain not able to interpret what the eyes see.  This makes sense to me (my case, that is) because of two factors. On my worst days, my vision is kaput. I can't get anything to focus right.  On my better days, my vision is not annoying, although unlike Goldilocks, it's never just right. 

Which leads me into a smooth transition. The second reason I get a daily pitocin shot is because "some" believe that it may be a pituitary problem. It's a bit much to go into today, so I'll address this in a future posting, soon.  It's a truly amazing thing that we've discovered, so it perhaps deserves its own post!  (Am I getting good at ya'll anticipating a post?  I'm tryin'!)

• HGH (Human Growth Hormone)  I think I've gone on and on about this, more than most ever want to hear.  These  HGH posts are found here (weight gain),  here (impact on fibromyalgia) and here (hormonal impact/levels).  But as I've mentioned once before, my rheumy is really worried that the HGH deficiencies he's seeing in his practice are almost epidemic.  (I'm adding the "almost," and underplaying his concern and alarm.)

 

And off we go into another weekend!  As always, I hope everyone's doing their very best, only better!  Wishing you a wonderful weekend.  Ciao and paka! 


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Adventures with eye doctors: bait and switch!

One of the few pictures of me in my glasses...helping out my daughter's 3rd grade teacher.

My world has been jarred again as I see disturbing trends in our medical system, trends that immediately affect my health and the health of anyone who is a "complex patient," not your run-of-the-mill broken arm, kidney stones, nor dog bite, as examples.  Suddenly we have all sorts of health professionals who I have no idea what the heck their position is, much less what their training is.  What is the difference, for example, between a physician's assistant and a physician's nurse practitioner - and these are just two practioner titles being bounced about, with more being created each day.  And suddenly we are getting every type of semi-doctor out there "treating" us when what we really need, and even request, is an MD.


To me the titles I'm encountering are as frustrating as trying to figure out the hierarchy and function of the "dust man" on the moon to the "sweeping man" on the moon.  I don't care for this trend, as you can see.  In fact, after all the time I've spent in hospitals, as well as going to so many doctors from all over the eastern part of the US, and then all the other hospitals we dealt with in my daughter's care in the Midwest, my head's been spinning trying to figure out who all these "semi-doctors," (often at best) are, and why they can charge my insurance company for a doctor's visit when the visit was by someone who is NOT a doctor.


Ah, I know you are wondering what does anything to do with anything?  But as I tell my children, bear with me...there is always a method to my madness.


I must say that, to me, one of the most frustrating aspects of CFIDS/ME and fibromyalgia is that we really and truly are in the caveman era as far as understanding this illness when it come to "eye health."  In general, I think we're in the Middle Ages when it comes to understanding this awful illness that has devastated so many lives, but in regard to eye care, we are definitely back in the caveman era.


But first let's get onto the same page here. When I was growing up, we were always taught/told in very clear terms, the difference between an ophthalmologist and an optometrist....and that you definitely had to go to an ophthalmologist to have your eyes checked.  Only if/when you were cleared for all sorts of exotic and not-so-exotic eye diseases and disorders, and IF you needed glasses (as was always the case for me), were you then sent on your merry way to the optometrist.  And mind you, the optometrist was the "poor man's option," which even my immigrant parents who made so little money never settled for: eyes were sacred.


And so, I grew up, and hubby and I united in marriage and had our typical American family. I, as well as my hubby and my children, always went to an ophthalmologist for "eye health."  It was hammered into us that an ophthalmologist is an MD who understands the entire "picture" of the eye, whereas optometrists, with all due respect, only have a degree in glasses and were trained to see if there are obvious problems like glaucoma, etc. Granted, in relatively recent years optometrists are also being trained in certain eye diseases and disorders and thus been allowed to perform some procedures and treat some illnesses, dependent upon which state they practice in. It's kind of scary to me to have semi-doctor treating my eyes, but hey, it's SUPPOSEDLY my choice if I want to pay the whopping fee for a physician (hopefully) or go the less expensive and lesser-trained route of the optometrist.


All in all, I must add, these distinctions are a simple explanation just to suffice for our intents and purposes here today.  Oh I know that there are those out there who can pick out bits of errors here and there, but for my purposes, this distinction is enough, to get us all onto the same page, as I mentioned above.


My experience, my family's experience, my friends' experiences have always been that when you needed glasses, the testing and prescriptions were handled by the ophthalmologist unless he/she had an optometrist on the premises who would do the test to establish what the corrective lenses numbers were in order to get glasses and/or contact lenses.  But on the whole, we've always had a eye exam for glasses done by the MD after he/she closely examined the eye for any diseases, or other problems.  Ay!  It is sooo hard to avoid stepping on people's toes here. But darn it, the truth must be addressed.


When my eyes go funky, I know it's just the illness, but still, it's rather disconcerting.  I feel that when it comes to our vision problems - agh! in addition to all the other problems we need to juggle - we're so busy putting out other fires that consequently vision is crazily put on the back burner.  However, there gets to be a point where the symptoms we experience finally hammer us down to where we DO need to see an eye doctor.


The problem is - I'm now learning - that with the rare exception, our vision problems for the "normal" person are no longer on the radar of the VAST majority of ophthalmologists because seemingly no eye doctors (MD's) seem to care about "us," the non-challenging, non-surgical patients.  I'm not sure just how long this has been the case.  But what, perhaps, may be even more frustrating, is trying to find an ophthalmologist who has even heard of CFIDS/ME and fibro - or even cares!  In other words, they don't give a poop and they want to make a ton of money from surgical procedures with their high reimbursements and don't care about underlying diseases, the "thinking" part of their practice, for which they do NOT get very "good" reimbursements.  So, in a way, shame on us for allowing these procedures to be highly reimbursed and shame on us for allowing the "thinking" appointments to be shabbily reimbursed.


It really frightens me, when I allow myself to think about it, that there's been no one in the vision field who understands what the implications of these illnesses are on the eye.  Without understanding, how are we to insure the health of our eyes?


For the last fifteen years or so, I've had the sorts of vision problems that all of "us" have.


How many problems do we have with our eyes?  Oh, it sometimes seems as if the troubles are endless. Aside from the pesky problem of having to wear glasses and the constant changing of frames every few years, we also have dry eye to contend with, as well as vision that fluctuates from day to day, often from hour to hour.  We have light sensitivity, we have focusing problems.


But basically, what we have wrong is that the signal the brain sends to our eyes is all screwed up.  There are a host of reasons as to how our eyes will do day to day, and I think that it depends an awful lot on how much sleep we get or don't get, as well as how ill we are and whether we're in a healthier state than usual, or are in the midst of a flare, under-stressed, over-stressed - the permutations are endless.


I'm smack in the middle of having my old eye doctor retire and not having found a new one.  One of the reasons for the problems in finding a new eye doctor is that suddenly ophthalmologists are too .... well, "high and mighty" might fit the bill.  When I last went to see a new eye doctor, hubby specifically told the receptionist that we wanted/needed an appointment with an ophthalmologist and not an optometrist.  I'm now speaking of the doctor who I thought might have been hitting the bottle on the side (as described in my March 1 post). 


After a very complete history was filled in during the waiting room experience and then an extremely bizarre examination, my eyes were finally dilated.  As we were waited for the doctor to come back to finish the exam, I was so bored that I actually started reading the various diplomas on the wall and for a moment thought I was hallucinating when I saw that the doctor was not an ophthalmologist, but an optometrist.  Wow!  I couldn't believe my brazenness when I asked her, upon her return to the room, "are you a MD?"  I really couldn't believe my ears when she said, that, no, she was NOT an MD.  And how was I to see the MD?  Well, she, the optometrist made the decision as to whether or not a MD's time was warranted and he only saved his time for interesting cases and surgeries.  Given that we had taken a disliking to one another by now (my having "called" her on not being an MD), we both knew that there was NO way that I'd get to see the MD.  Interestingly enough, hubby had no "interesting" problems a few months earlier, but HE was given an appointment with the MD.  Hmmm.  


How I wanted to tell her just how interesting my case was!  When I went to the "get your glasses in one hour place" at the mall, after the fiasco of the unique experience of having two sets of wrong prescriptions and having to sit through another optometrist's exam, I discovered that the situation I found myself in was not unusual.  The optometrist who had to redo all the work of the previous optometrist told me quite frankly, "Good luck finding an MD who'll do an eye exam these days or look at anything but the most interesting cases which they deem fascinating or not."


How crazy is that?   And how is that that NO ONE reads charts any more, much less the histories that we patients spend how much time filling out?  


I've been on daily shots of pitocin (oxytocin) for at least fifteen years now.  There is no test that can measure if you have an adequate amount of pitocin in your body or not.  Given that my body is so messed up, my GP and I thought that there was a good chance that the pitocin in my body was low.  Add to that the fact that my first baby was a week late and was a mid-forceps delivery, that baby #2 didn't come out for three weeks and then had to be induced with intravenous pitocin and baby #3 was induced and then had to be extracted with a vacuum device.... Well, the chances were high that I did have a pitocin problem.  Unfortunately, no one's really sure what pitocin does in a body.  Everyone DOES know you need it in order to push out a baby, and there is anecdotal evidence that eyesight is affected by pitocin, but even there, we're into some murky territory.


The only real way to know if you are pitocin-deficient is to get a shot of pitocin.  If your vision improves in ten minutes, then you're in luck: it's a problem that can perhaps be remedied by a daily shot of pitocin.  And so, each day I get a pitocin shot and for a part of the day, my vision improves.  How much is not predictable, nor for how long, etc.  I'd really like to see an MD "in eyes" about this aspect of my health, given how important eyes are.


After this way too long post (congrats if you made it this far!) do you now see what I mean about being quite fearful of this lack of understanding of vision and CFIDS/ME and fibromyalgia?

Gives you something to think about.  Or as they used to say when I was growing up, "put THAT in your pipe and smoke it!"  Ponder about it a bit, is what it means.