quest for a faerie child

this is my life...

In March 2003, I was diagnosed with multiple sclerosis.  The diagnosis followed two years of extensive MRI's, as a result of being diagnosed with a condition known as optic neuritis.  Optic neuritis (literally, inflamation of the optic nerve) is a pre-cursor to MS in something like 70% of individuals who develop the condition.  The condition went away in a month, but it branded me with a probable eventual diagnosis of MS for the remainder of my life.  That branding meant that I would never be able to self-insure myself for the rest of my life.  My only hope of ever being insured is through employment based health insurance.

I was eventually diagnosed with MS because my MRIs continued to show changes over time.  My first MRI showed what's known as a lesion on my brain and on the optic nerve.  A lesion is kind of like a tumor, sometimes described as plaque.  If it is a result of MS, it can attack the nerves and cause demylenation which affects the impulses the nerve gives and receives.  Over the two years of being watched, my brain scans continued to show the development of more lesions, not many, but enough and in a place that is indicative of multiple sclerosis.

I never showed any signs of lesions on the spine.  Lesions on the spine are a pretty clear indicator of MS and can lead to some of the more severe symptoms, symptoms which one equates to disabilities, mobility issues, etc.

My symptoms were never really an issue.  A tingly left leg here, a tingly left arm there...some exhaustion at times, but nothing severe.  My doctor wanted me on a very invasive drug therapy and I resisted for about a year or so.  Eventually, I gave in and went on the drugs, but I stopped early last fall.  I don't really know why I stopped.  Perhaps it was because I hadn't really had a symptom since I'd been diagnosed, even though my MRIs did show some changes.  Perhaps it was because I somehow knew that Moose and I were going to meet and children would be the outcome.

Whatever the reason, I stopped.  And then I met Moose.  We fell in love within the first two weeks and I ended up pregnant after a couple months.  We lost that baby, much to our dismay and despair.

When I got pregnant again, I didn't really think about my MS.  In my heart, I believed I may have been misdiagnosed.  I never got a second opinion.  I just went with what my doctor said.  I trusted him, implicitely.  However, at some point, I started to wonder if this whole MS thing hadn't just been wrong.  I mean, haven't I had enough go wrong in my life?  Do I really need to deal with MS on top of it all?

So, in the back of my mind, I'm considering... hell, even believing that I don't really have MS, that after the doodlebug is born, I'm going to get a second opinion and let them run all their tests on me and then I can be free and clear of MS and its potentially icky hold on me and my life.

In August, I began having tingling and severe numbing in both feet.  It was like electric impulses and sometimes it was difficult to sleep.  I thought it was pregnancy related and attributed it to the 'restless leg syndrome' you see listed on pregnancy sites.  At the same time, I started noticing this vibrating, electric pulsing sensation going down my spine.  It was worse if I bent my neck forward, but for awhile it was there all the time.  Over time, the tingling and numbing traveled from my feet to my lower legs, to my thighs, and then to my torso, where it hovered at about mid-chest level.  The whole time, I am attributing this to my ever increasing uterus which was measuring large all of a sudden.  Over time, the vibrating sensation in my spine quieted to only when I moved my neck and was seated in certain positions.  Over time, the numbing and tingling moved out of my chest area and down into my hands where it has remained until now.  It's not as bad as it was, but it is still there.

Enter the midwife and perinatalogists who wanted me to get a consult with someone at the MS Center at OHSU because I hadn't seen my doctor in over a year.

See, most women who have MS experience a remission during pregnancy.  It has to do with the fact that your immune system is surpressed while pregnant.  MS is an auto-immune disesase, wherein your body starts attacking itself.  If your immune system is surpressed, then your body is less inclined to attack itself.  So, MS is usually not a problem while pregnant.  It is afterwards, that women can sometimes experience a backlash of sorts, when your immune system kicks back up.  The midwife and perinatalogists wanted my care to be established with someone (if I no longer wanted to see my old doctor) in the event that something happened.

It may also be that they suspected what I was experiencing might not be pregnancy related. 

I, of course, never suspected it.  I mean, sure, I thought about it but I dismissed it because I had never had a symptom occur on both sides of my body at once, equally and yanno, I had been misdiagnosed, right?

What I didn't know, what I couldn't really have known is that symptoms occuring from a lesion on the spine, can manifest themselves completely differently than the brain lesions.  What I didn't know was that vibrating sensation I am describing is an absolutely classic indicator of a lesion on the spine.  What I didn't know is that a neurologist can almost pinpoint without an MRI exactly where the lesion is occuring based solely upon my description of my symptoms.

I found all this out on Wednesday.  I also found out that the very capable doctors at the MS Research Center also agree with my doctor that I do have multiple sclerosis, and that I am most definitely, even without MRI confirmation, experiencing the most severe episode I've ever experienced, that it is a result of a spinal lesion and that I am experiencing all this while pregnant.

In the words of the neurologist, "it is a bit worrisome that you are experiencing this while pregnant."

Yeah, no shit it is.  I thought I was free and clear, not to mention the fact that I was convinced I didn't really have MS.  Apparently, I was wrong about that.  Apparently that was some super delusion I cooked up and fed to myself in order to make myself feel more normal.  Apparently dealing with doodlebug's issues aren't all we need to endure this pregnancy.

Anyway, so I've been dealing with that all this week.  There are serious implications that I still need to discuss with the perinatalogists, because I believe we were originally told by one of the perinatalogists that women with MS have a greater chance of preterm labor and if there are actual episodes occuring during the pregnancy, the chance gets even greater.  After labor, I'll get a brain and spinal MRI and depending on the results of that reading, it will probably be recommended that I go back on the invasive drug therapy, which pretty much dashes my breastfeeding hopes, if I make the decision to do it.

So... that's my life these days.  I'm not freaking about this.  I'm just entirely disappointed.  I'm reaching the end of my rope when it comes to medical issues and I seriously have seen just about all the specialists I can endure.  I'm once again, facing the reality of the fact that I have a disease which has the potential to be seriously deblitating and that I took a huge step forward in the progression of that disease at a time when things are supposed to be quiet.

Ah well, this is my life, right?

my name is DOCTOR asshole to you

I'm on an emotional roller coaster which appears to not want to let me off.  It's like being stuck on a circular ride that spins faster and faster and all I want is for it to stop, but instead it just keeps going on for an eternity and I can never actually exit.  This is what my life is like these days.  I was doing really well there for a time.  I was positive.  I felt really very good about the doodlebug's prospects.  I was satisfied and happy with the people treating us.  Every bit of information we've gotten since the initial horror show has been positive. 

That is until today when we saw the pediatric urologist.

Let me first say that we waited an hour and fifteen minutes past our appointment time for the man and his student to deign to see us.  Then when he got there, he proceeded to tell me it took him awhile because he was looking at our ultrasounds.  He proceeded to tell me everything I already know about my 'prenatal' condition and the doodlebug's condition, including explaining the amniotic fluid level/lung correlation, etc.  I am fully aware of this.  I am fully aware of everything that is going on with my prenatal pregnancy.  What I am not aware of is what could need to happen to the doodlebug upon birth.  What I am not aware of is how a decision would be made as to whether or not we would need to deliver early.  What I am not aware of is what the timeframe would be for monitoring and fixing the doodlebug's problem.

I found the man to be condescending to me (and yet not to Moose), rude, evasive, vague, inconsistent with what we've heard previously, enamoured with large medical terms that he seems to enjoy throwing around and not fully aware of the facts of our particular case in some instances.   I found him to be incredibly negative.  In short, I despised him and I do not use that descriptor lightly.

Moose agreed with me.

Moose also felt the man was condescending solely to me.

Basically he said that this is not a condition that would work itself out in our case because it was found so early at 15 weeks.  When I told him it wasn't found at 15 weeks but rather at 20 weeks and that the 15 weeks looked normal, he then looked back at the ultrasounds and said it was at 20 weeks but that people don't usually have scans at 15 weeks.  When I asked if it meant there was more of a chance of it working itself out because it was found at 20 weeks rather than 15, he said the anatomy scans are done at 20 weeks.  At that point, I was thinking to myself "you are not fucking answering my question in any way shape or form!"  Does anyone else see the illogical aspect to this conversation??

He said it's not good that they found cysts on the kidneys.  By that time, I didn't bother to correct him by saying that they see possible cysts on one kidney, not both.

I asked him what the process would be for treating doodle after birth and he gave me a bunch of mumbo jumbo which included ultrasound, voiding cysto something (I can't recall the full name but I know what it is), monitoring of the lungs, a catheter, surgery, etc. I then had to say, 'yes, but what is the timeframe?"  His response was, "after birth."  So, then I had to say, "So are you saying I give birth to the baby and then he's gone ---and away from me immediately?"  And he acted like, 'well... of course.'

At that point my heart broke into a million pieces and I curled up in a fetal position and cried rivers.

Not really.  But it happened inside.  I then had to say, "So, if he's got a catheter...does this mean he's going to be in the hospital all this time?"

The answer is yes.  And again, I wanted to die.

By then I was fully irritated with him because the man had the empathy of a clay pig and I just wanted to get the fuck out of that office.  He must have noticed the full glare of my evil eye because when I stood up to leave, he made a half-hearted gesture to touch my shoulder and then said "I'm sorry I can't tell you more."

I just said, "Yes, we're used to there being a great deal of 'we're unsure' responses by now.  Thanks."

And we left.  In the end, really nothing he told us is any more than what we'd already read on the internet or discussed with the perinatalogists except that it had a distinctly negative, surgery-laden, invasive frame and I really found myself wanting nothing more than to stomp all over him. 

I can't imagine my little doodle in the hands of a man who seems to have a problem with women and with midwives.  He kept refusing to accept that Patti is coordinating my care and not one of the perinatalogists and he would not answer my questions.  He talked around them.  For instance, I kept asking him to explain what it meant that a certain type of surgery would need to be performed only if the child was big enough.  I kept saying, but how big does the child have to be?  He would not answer it.  He would say something to the effect that the other type of surgery could be done on very small babies so it wasn't an issue but then when I kept pressing did say that the other type of surgery has implications for bladder development.... but yet STILL WOULD NOT TELL ME HOW BIG THE BABY WOULD NEED TO BE.  He would say, "the urethra needs to be large enough."  And I found myself wanting to scream at him, "OK ALREADY.. I"VE GOT THAT IT HAS TO BE LARGE ENOUGH BUT IN YOUR EXPERIENCE WHAT DOES LARGE ENOUGH MEAN????"

I mean what is so goddamn fucking difficult about answering that question??  He never did answer it, btw.

He also spent a huge amount of time discussing the shunt and the whole time I kept thinking, "listen, the shunt is not indicated right now.... so stop talking about why you would place it and why you wouldn't because goodamn it ... I KNOW THAT ALREADY."

Anyway.... I'm now incredibly stressed and I feel like crying oceans because I won't get any bonding time with the doodle once he's born and I'm likely to wind up worried sick.  He won't be in my room with me.  He'll be all alone in NICU and I just feel like dying inside.

So there you have it.  Thanks Doctor Asshole.  You are a condescending prick with the bedside manner of a rattlesnake and I want you touching my baby like I want to kill myself.

Thanks...

the untold painful secrets of pregnancy

So, I never did get back to the intruder alert story, did I?  At the moment, I'm in too much pain to contemplate the retelling of that event.  I'm in a really ridiculous amount of pain for something that noone really ever explains to you before you get pregnant.  I mean seriously... how come noone tells you that eventually you are going to feel as if your pelvis is coming apart, or that the two bones will rub together and pull apart until you feel as if you are in an incruciating amount of pain when you shift positions, when you stand, when you walk, when you sit and contemplate quietly, when you do just about anything you could possibly do???

It would seem to me to be a crucial piece of info to distrubte to those of us who are not masochists and who still decide that pregnancy is the way to go.

I don't mean to complain here, but I'm actually getting a little frightened because I am wondering how much worse this is going to get over the next 3-4 months.  I've never really considered myself a pansy in the pain department.  I've endured a great deal of it over the course of my life.  However, somehow, the random oddness of discomfort that arises during pregnancy seems to have gotten my goat. 

Perhaps the next time, I'll be more prepared and less shocked by the whole thing.

Perhaps, I'll be prepared and handle pregnancy like a pro, instead of like a whining baby.  Perhaps pigs will fly and hell will freeze over, too.

My pregnancy and the baby boy were announced at a program meeting today.  I had to catch myself from screeching, "Nooooooo!!" when my director put me on the spot to ask me in front of 30 people if it was ok to let people know what I was having.  First of all, about half of them (at least) probably didn't know I was pregnant, because I couldn't care less whether or not they knew.  Secondly, it's that whole superstitious thing.  "Don't tell anyone.  Things aren't perfect.  Things could go wrong."

That's the nasty voice in my head, whispering those things.  That's the "the other shoe could always drop" voice in the back of my head, the one I try to shove aside, while simultaneously stomping on it.

In the end, though...I went with it.  This should be joyous.  This should be happy.  I should be able to experience happiness at saying, "it's a boy!"  I should experience happiness, especially when His Doodlebugginess is kicking and punching and shifting around like a circus performer on crack.

I owe him that.  I owe Moose that.  I owe myself some happiness and some joy.

my worry

Sometimes I catch myself wondering if I am setting myself up for heartache by getting ready for doodlebug's arrival.   Usually, I shove those thoughts away because I want to think positively.  At this point, we have no reason to think that we won't make it to delivery.  We have good signs.  Things could be so much worse.   Even if I don't know what everything means and even if we don't know exactly what is ahead for the doodlebug, that doesn't mean he won't be born.  That doesn't mean he won't survive after he is born.

I must remain positive....

But, I'll tell you a secret:  sometimes it is really hard for me.  It's sometimes so incredibly hard, especially at 1am in the morning when I awaken to pee.  There are times when I can't let myself sleep until I've felt him move, and by that time I am so awake that I cannot go back to sleep.  I think that is the true source of my insomnia these days... and nothing else.

My worry.

My worry keeps me awake.  My unconscious worry gives me stomach cramps, the likes of which I haven't felt in a long time.  My worry makes me feel fuzzy-headed and half-awake.  Would anyone like to take my worry?  I'll give it over gladly.  You may just enjoy it.... as it obviously comes equipped with enough waking hours to get whatever you'd like done and that feeling of being somewhat high or tipsy... just enough so that you can't think quite right.

Just let me know....

to be a good day or bad....

I can't decide if today has started off well or if it has landed itself in the Kiernen Hall of Fame.  Why you ask?  Well, let me elaborate on this for you.  I'll begin with the Kiernen Hall of Fame reasons: 

I awakened at 1:00am this morning and could not get back to sleep until sometime after 3:45am.  My alarm goes off at 4:14am.  This allowed me just enough time to drop into a dreamstate, only to be rudely awakened out of it less than a half hour later.

Why was I unable to sleep?  Oh, the doodlebug for one.  I allowed my crazy little mind to freak out over any number of possibilities, not the least of which was the astronomical amount of money the pregnancy alone is going to be.  I've seen more doctors in the last couple weeks than I have in dealing with my MS and while I just want everything to be ok with the bug, it's incredibly difficult to be continually poked and prodded and scanned and examined, over and over and over again.  And then sometimes, my mind runs to the number of doctors who are going to tap us for their 'exams' and 'opinions' and 'second-opinions'.  That probably sounds terrible, but hey...I don't know many people for whom money isn't at least a passing concern. I won't even mention the number of ultrasounds I'm likely to have before I deliver.

Another reason I was unable to sleep is because I've been fairly absent from work lately and I am so far behind I can't even wrap my mind around it.  On top of it, we've got fall conference going on this week and every second is scheduled with that or with interviewing applicants for an open position.  It leaves me no time to do what i need to.  So naturally, I had to obsess on that beginning at 1am, as well.

And how did I end up going back to sleep?  Well, in typical fashion, I decided at 340am that I would just get up and go to work.  I turned on the light, went into the bathroom, peed, realized as I was peeing that I was pretty damn tired and that my hips were killing me, went back into the room, turned out the light and decided to lie back down for a few minutes to get comfortable, and then the next thing I knew, the alarm was blaring beside me.  I snoozed 4 times and then managed to crawl out of bed and get ready.

Once I got into work I went to get the community pass key to get into the offices, because I lost my own office key long ago and they are nazi's about the keys here.   I don't know what I'll do when I stop working here because I'll have to admit that I lost my office key and they'll probably take the doodlebug as punishment. I opened the hiding place and lo and behold????  The key was not there!  That's right, the key was not there.

So, now I'm sitting in a cube outside my office, looking longingly at my office door and realizing that I am not likely to get in there until closer to 9am.  9AM!

The horror of it all.

The horror of it all when I have craploads and I mean CRAPLOADS of work to do in there and my scheduled day begins at 9am.  I'll literally not get a THING done.  NOTHING. nothing.  NOTHING.

So, now you are wondering how my day could possibly be good?  The simple reason is that I could have been in here at 4am sitting in a cube with NOTHING to do.  Instead, I was enjoying a few moments of sleep and comfort in the one wise decision I have made today.

Usually this is not the case for me.  Usually, once something starts to go wrong, I have about 4-5 things cascade from there.  It's like I become a magnet for misfortune once I've experienced one issue.  Apparently the universe decided to spare me this time, which is a really great thing considering all the crap the universe has slung at me in recent days.

Thanks universe.  Thanks for getting my back on this one.  I'll get ya next time.

Overall, I think I'm doing ok.  I have some freakish moments, but I'm much better off than I was throughout last week.  Mostly, I find myself feeling somewhat saddened because there were times during the scan from hell yesterday, times in between those when I wanted to scream because my back was hurting so badly from laying in one place for hours, times when we got to really see the bug moving around.   I had a resident practice scanning me in between techs and doctors coming in and out in consultation.  She would sometimes leave the transducer in one place on my belly and we could see his little feet flex and his little legs kick.  We could sometimes see his little profile and his arm waving over his head, or his little fists punching.  It was an amazing thing, really and an opportunity you don't often get when they are quickly trying to take their pictures and measure all the different anatomical parts.

It would have been nice to have just been able to enjoy that experience and to not be analyzing everything you've heard said in low voices around you, in order to somehow make a determination as to what the eventual news will be.

It would have been really nice.  However, I'll take what I can get and at least we were able to have the opportunity to see him really moving about.  At least we have that, right?

a tale of two kidneys...

I am a great deal calmer today.  I feel I am prepared to discuss things without bursting into tears or without curling up into a ball of death because I am absolutely certain the end of my world is coming.  I will open up the previous two posts, I composed and saved as a draft.

Today we had a follow-up, second opinion ultrasound, an ultrasound which lasted two hours --two hellish hours with me on my back and four different people scanning me at various times and with as many as 7 people in the room.  Based upon last week's ultrasound, we went from thinking there was a possibility of either unilateral multicystic dysplasia of the left kidney and no right kidney to bilateral multicystic dysplasia to multicystic dysplasia of the right kidney, calectasis of the left kidney and dilation of both ureters, to no right kidney and calectasis of the left kidney and dilation of both uretuers, as well as a thickened bladder wall.  We were told there was the possibility of genetic issues, of cardiac issues, of renal failure, of lung issues.

The doodlebug was not active during the last ultrasound, refusing to move off his right side so that we could get pictures of his right kidney.  We couldn't get good pictures of the heart.

This ultrasound, I did everything in my power to make sure he was active.  I stopped all caffeine a week ago in order to more accurately determine hydration.  I did not go in to work this morning, but instead lazed around, which has the tendency not to lull the doodlebug and consequently, he's more active.  I downed a bottle of orange juice about an hour before to give him a sugar rush and I prayed to every possible higher entity out there.

The good news is that he was incredibly active and willing to let us get good pictures.  The good news is that so far the heart looks good.  The good news is that he does have two kidneys and so far they do not appear to be multicystic.  The good news is that the amniotic fluid is still in the normal range and that the bladder is not enlarged. The bad news is that he has an obstruction of the posterior urethral valve, which is the most severe obstruction a fetus can have.  The bladder wall is thickened, which means it is working harder than it should.  The ureters are dilated and they cannot tell whether the kidneys have been damaged as a result of the obstruction.  They do not know how bad the obstruction is, but it is not 100% because there would be little to no amniotic fluid by this gestational age if there were.

There are possible interventions if things worsen.  There are possible interventions in utero if things worsen. We probably will not know the extent of damage until birth.  There is the possibility of renal failure or the necessity for renal transplant after birth.  There is the possibility that the obstruction could worsen in utero, causing a drop in amniotic fluid and damage to the lungs.  There is the possibility that things will end up fine, although it is a probability at this point that some type of surgery will be required post-natal.

But, the diagnosis is not consistent with genetic issues and therefore we did not need to see a genetics counselor today.  We do not need to make a decision on amniocentesis.

The worst diagnosis --bilateral multicystic dysplasia would have meant he wouldn't survive.  The condition is incompatible with life.  At least it was not that.  He does have a severe obstruction, one that affects both kidneys because of its location and which can severely damage the kidneys but at this point, there are good signs.  I have to have a fetal ECHO on the 29th and another ultrasound on the 4th.  We will continue to be scanned every 3 weeks for the remainder of the pregnancy.  They expect, based upon the good pictures of the heart this time that the ECHO will be normal.  We have to see a specialist on fetal bladder shunts on the 25th and they are scheduling a consultation with a pediatric urologist, as well.

So, that is the story.  I've been hiding out, trying to absorb all the possibilities, preparing myself for all the various outcomes, making preliminary decisions on whether or not to have an amnio, reading obsessively on fetal kidney development, trying not to fall into a black hole of despair, and communing with the doodlebug by trying to remain calm and positive...

Today, there is a diagnosis and although the prognosis is truly nebulous, I am armed with more information and there are things which can be done versus what could have been ---two non-functioning kidneys and nothing to do about it.

Only time will tell...