Thursday, May 9, 2013

Restless

Well, after a wonderful hour and half of sleep my body said, ok you've had enough sleep now so it's time to wake up.

So now I'm up for the day (I assume).  I thought I'd just go through the history of my disease and hopefully that way get a better grasp on things.  Sometimes I find it hard to articulate my thoughts about it to physicians because I feel as if they pass it off as if I'm stupid or crazy or whatever else.  Who knows what they think, but I can assure you of this, it's the rare physician who truly cares enough to take the time to listen (no offense to those of you out there who are physicians).  I understand that in today's society, they can be quite busy, but the normal run of the mill patients popping in for a cold, or check up don't typically require the level of understanding that someone with a complex problem does.  I think perhaps they've forgotten about triaging and putting things in an order of importance.

Nearly 20 years ago, I was a young married woman who was sent to fertility doctors because I'd been married for quite some time and the only whisper of fertility I had was a miscarriage that was undetectable because my hormones never shifted.  In other words, my body flat out refused to change in order to support a fetus, therefore traditional means of "detecting pregnancy" did not work on me.  I was frantic, I was pregnant, I knew I was and I begged the doctors I worked with to help me because I was having nightmares that my child was in imminent danger and would die if not helped.  I was sent to a larger hospital from my clinic in hopes that the doctors there would have a further grasp on what, if anything could be done.  I was treated like a stupid child and passed off as an ignorant buffoon.  I was told in no uncertain terms by a physician who had less time in medicine than I did that if their pregnancy test did not detect pregnancy, there was no way I could POSSIBLY be pregnant.  2 days later I was hemorrhaging I went to see one of the doctors I worked with, he did a pelvic exam, which revealed I was in fact pregnant and having a miscarriage.

This was my first experience with doctors that don't listen.  My one chance in the whole wide world of having a child was summarily snatched from my grasp.  Never again did I have so much as a whisper of a chance of motherhood.  This also started the decline of my psyche in regards to my womanhood as well.  It took me a very long time to come to terms with infertility as it relates to being a "real woman".  A few years later when nothing further happened, doctors I worked with at another duty station told me, it might be a good idea if I went to the fertility clinic as we had some amazing doctors there that had great results.  I attended my appointments diligently, and nothing happened other than occasionally having cysts show up causing them to have to take me off fertility medication.  Still, no one knew what was wrong with me.  They chalked it up to an oddity, an otherwise "healthy woman" that for whatever reason refused to get pregnant.  They were all very kind, and in their defense, they had no reason to believe that anything was "wrong" with me.  At that point I didn't even know to think that.

Well, I began to notice I was gaining weight, and oddly, I was a fairly active person.  I had been accustomed to running, or weight training, swimming etc.  So to be gaining weight made me wonder  what was going on in my physiology to create such a change.  I began speaking to doctors about this, and seeing an otherwise "healthy" person, they chalked it up to overeating.  I'd never been one to really overeat, and I'd not recently changed eating habits, but in the interest of trying to help things along, I started trying to alter my eating habits to compensate for this shift in weight.  In the end, I was still gaining weight, and down to 2 cups of rice a day, and once a week adding campbell's soup to it to flavor and add some additional nutrients since I was quite literally starving myself.  I continued to gain weight, although at a very stunted pace.

I began to suspect that something more was going on......and yet I was being told there's no way I could be being honest about what I was eating and weigh what I weighed.  Now, any of you that have ever been in the military know, being fat and being in the military do not mix.  According to military standards I was now fat.  By civilian standards I was probably more like above average?  I don't know how to compare it.  At any rate, I was told I was crazy, a liar or whatever else.  I was seeking help, not seeking a label wrongly placed on me.  I was frantic.  I had had occasional migraines before all this started, and now they were occurring nearly every day of the week.  This was all the more alarming because at the onset of some of them, my vision would completely black out.  At the time, I was working in immunizations, and it's a bit offputting when you're getting ready to give someone a shot and out of no where you can't see for a few minutes.  For this reason I prepped the needles and then called in the patients, that way, if my vision inexplicably disappeared, I could stand perfectly still and wait for it to return, continue on with my patient and then seek help once I was done.

I was also starting to have pains in my hands and feet whenever the weather shifted, and I was having more and more spinal pain.  At this point, there were times when I would also be hit with an abdominal pain so sudden and sharp I would literally be taken down to my knees.  I was sent for mri's, cat scans etc.  The conclusion was that I had a "typical migraine brain".  Which means that it's highly vascular.  What happens when a migraine hits is that all the vessels in the brain dilate placing pressure on the nerves, brain etc causing pain.  The best guess I have is that the vessels near my eyes were dilating in such a way it was pinching the ocular nerves, but nothing more serious than that.

Around this time, I was getting depressed because the doctors I worked with every day and KNEW me, knew I was teaching others to care for patients, how to treat them etc., were treating me like a 2nd class citizen.  In the Navy, a Corpsman is near to the equivalent of a P.A. without a license.  We see patients, and treat them since the influx of patients can far exceed the M.D.'s capacity to see them all.  When and if needed we would simply knock on this or that doctor's door or wait til they were at the central desk and get a signature on a prescription etc.  If a patient needed higher than our level of diagnosis we would set that chart aside for a doctor's exam.  Now, I was running the area at the time and teaching and evaluating "strikers" who are people that want to get into Hospital Corpsman "A" school.  Somehow, there was a rift in my ability to do my job and the way in which the physicians I worked with were viewing me.  To be perfectly honest, I think it all hinged in weight....fat = stoopid......and yes I know I misspelled it, when something is beyond stupidity, I tend to label it as stoopid.  In their eyes I had ceased being a credible, competent person, though my duties had not changed, nor my ability to do my job or handle a huge amount of responsibility.  I'm not sure who or what they thought was doing that.....perhaps the thin me took over and they only saw the fat me whenever they were out of their closed doors.

I'm not sure how it happened, but a new young intern or resident that was specializing in internal medicine took me aside to her office.  She asked me to bring family photos, did every kind of blood test etc she could think of.  It turns out her hunch (and mine) was right.  Now, I can't recall the name of the test at this time, it will probably come to me when I'm not trying to think of it.....that happens.  But estrogen to androgen levels should be under 2 : 1.  If it's above that PCOD is suspected.  Mine blew the numbers off the charts.  I was in over the 90th percentile.....meaning at that time 90% of women at my level of the disease had diabetes.  Now, PCOD has also been termed Stein-Leventhal syndrome.  In the past 18 years since my diagnosis several things have happened.  They've retermed it as PCOS, changing it from a disease to a syndrome.....not sure how this benefits things, but to me it downplays it's significance and insidiousness.  I'll explain why it will always be PCOD to me (Polycystic Ovarian Disease).

At the time of my diagnosis, not much was known about it, when I went to the fertility doctors with my brand spankin new diagnosis, I believed more help would be forthcoming.....I was wrong.  All they seemed to know was that it affected fertility and could cause women to become diabetic.  They absolutely flat out refused to believe that it could cause shifts in weight, although when they treated me with birth control (the only known treatment at the time) I lost 30 pounds in 1 month......talk about frightening.  Now it's recognized that this is also a systemwide endocrine disorder, and that insulin receptors are resistant to existing insulin created by your pancreas.  Your body is in essence telling you, food? what's that?  IDK what to do with this stuff.....let's send it to the fat cells til we figure it out.  Some food may be processed, but the majority of it is shipped off.  Most foods break down to different types of sugars etc that need insulin in order to be processed and used by the body.  PCOD does not allow for this to happen very well.

It's been 18 years since my diagnosis....roughly could be a bit more or less, but I think it's more.  And they're only just now in the past 5-6 years recognizing the endocrine affects.  I told them 18 years ago what it was doing to me, imagine how famous they would have been had they listened.  They've STILL not heard me fully.  I will illustrate.  When I entered the military, I had a full spinal x-ray.  This revealed a minor curvature in the lumbar region of my spine.  I had NO pain or side effects from this curvature.  After 2 years of struggling with my fertility, weight, migraines etc, either just prior or just after my diagnosis (forgive me I am not sure what the timeline was exactly, I think it was after).  I was having so much back pain, I talked to one of my friends in the x-ray department, and decided he needed the practice doing more time in the dark room, and so he did a full spinal on me.  He brought it to my department, and put it on the viewer.  Now, prior to this x-ray I'd seen one of the doctors I worked with and told him I was having some pretty severe back pain.  He assured me that scoliosis could NOT advance in adulthood......in other words, once you hit puberty your spine would be as curvy as it would EVER be.  That same doctor happened to be walking by when my friend put my x-ray on the viewer for me to see and his exact words were "HOLY SHIT!  WHO'S SPINAL X-RAY IS THAT!?"  To which I replied, it's mine....so much for your theory that scoliosis can't advance in adulthood, and btw your bedside manner needs some improvement, could you imagine if I were with a patient and it happened to be theirs?  What we viewed was a spine that began curving at the neck, back and forth all the way to the tailbone, which was also akimbo.

There is far far more to this disease than doctors are willing to listen to or understand.  For nearly 20 years, even without treatment I've fought the symptoms that all came to me during that time period.  I should have full blown diabetes.....I'm borderline.  The doctors absolutely refuse to look at me like a complete picture.  I do think that some understand that it can affect cholesterol, but I don't think all understand that aspect of it.  Mine has been high since my diagnosis.  I should have had a stroke, high blood pressure etc from that.  I haven't.  It is my firm belief that everything is related.  The frequency of migraines, the arthritic type pain, the spinal curvatures.  I believe that this disease if sapping the calcium or connective tissues from my body causing this to advance at an accelerated rate.  I'm now at a point where my body acts like that of a 90 year old woman, instead of a woman in the prime of her life.  It scares me to death the lack of understanding.  MY GOD ARE YOU BLIND!?  All of these things began happening to me simultaneously.....that would be one HELL of a coincidence.  Sherlock Holmes would say, the simplest solution is usually the correct one.  I'm sorry, but the simplest thing I can think of in this situation is, I'm one hell of a learning case, AND a prime example of just how insidious this disease is and can be.  Even if my symptoms can't be reversed Please God let them see.....open their eyes and help keep another woman from going through the suffering that I've had to go through due to sheer blindness and disregard!  How can all of this happen at the same time and NOT be part and parcel of the same process?  It's not a piecemeal picture, it's a full mural painted in perfect detail for you if you're willing to see it.

After my initial diagnosis, I ran into other women that had also had symptoms similar to mine, and I encouraged the doctors that I worked with to do the estrogen and androgen comparison for them, they were diagnosed earlier than I was, so I'm hopeful that they were luckier to avoid some of the more insidious effects of this disease, but Doctors have GOT to open their eyes and listen to patients.....learn to look a the full picture and not just this or that piece.  It's all well and good to treat symptoms but if you're not addressing the problem, it won't do any good.  I wish a doctor would stumble on this, see it and say my GOD how did I ever miss this with my patients, it makes perfect sense.  Now 20 years later, I can barely walk without my hips going out of joint, or sit or stand for long periods of time without agonizing burning pain, or sleep without back, knee, hand or foot pain.  I'm a lil old woman in a young woman's body......help, please God help me to keep other women from this agony and terror.

Now I will say my PTSD is not related, however, it is being exacerbated in part due to these things above since I'm so scared about my future.  Longevity runs in my family, my one Grandmother lived til 86 the other well into her 90's  If I'm like this now.......how would I be at that age.  I've applied for disability and I pray to God I get it soon so I can stabilize and maybe find some help to slow or stop this process.  If I can't slow it, I'm afraid I am not going to fair very well.  Although nearly 20 years have passed and I've fought the good fight so far.

Hopefully I've covered everything.......although I'm sure I've missed things here or there, I tend to do that since there is so much going on all the time, and I tend to forget when it's not actively happening.