A Mother's Musings and Mumblings

Friday. The day that the witchlets return to me from WF’s house. Thing 2 arrives hoarse but otherwise well. Her theory is that she may be allergic to the horse she’s been riding all week. Good guess so I pack her up and bring her home to give her the Dr. Mom treatment.

Well-hydrated child in no apparent distress. Voice is raspy but she denies sore throat. Lymphadenopathy present in the posterior cervical and sub-mandibular chains but non-tender and moble nodes all. Ear drums both slightly dull but no fluid noted. Nasal mucosa normal. Posterior oropharynx normal with no drainage or erythema. So prolly allergies.

Now, all first year med students and other students of Dr. Google – tell me what’s wrong with my approach. Yup. I didn’t look at a damn thing below the neck.

So as we’re wrapping this up, Thing 2 says “This doesn’t have anything to do with the bruise on my leg, does it?” I love immediate feedback on exams, don’t you? Too bad I’m an idiot.

Thing 2 drops her drawers and shows me the “bruise” on her leg. Kinda a bruise, kinda burst blood vessels. And no matter how I asked, she swore that she did NOT injure herself. “No, mom, that part of my leg never touched the horse.”

I decide to go with my first impression, call this allergies and ignore the bruise as something that happens to children who don’t quit moving.

Fast forward to this morning when Thing 2 is ready to head to the pool and I get a look at her arms. (Told you I was an idiot. Yup, even with the hint the size of a former Soviet Republic I still didn’t look her over head to toe.) She has the same bruise/blood vessel thing on her arms. Worse on one side than the other but still there on both.

Stepping out of her swimsuit and back into my office I instruct my child that no physician should ever ask you to completely strip. Except me. Now strip. She does and the ONLY spots I see are her arms and leg. Nothing anywhere else. No other findings. No abdominal pain or masses, no murmur, lungs are clear, adenopathy is stable. And most importantly, she’s acting fine. Perfectly normally. For Thing 2.

At this point Dr. Mom is asking herself: “WTF?”

I’ve asked this kid every way I can about injury and she denies anything – so bruising/purpura without trauma opens up a can of worms. I start to run through the list, ruling out most of the infectious things. Somewhere in the middle of my monologue, I see the scrape on her arm.

No trauma? Scrape? Back this train up.

WM: How did that happen?
T2: Getting out of the pool?
~pause~
T2: Doing 53 belly flops wouldn’t have anything to do with this, would it?
WM: Go to your room.

You know. It’s hard to generate an accurate differential diagnosis without a good history. I wonder if anyone has told Dr. Google that?

I don’t have a lot of friends at work – not because everyone I work with is intolerable but because I seem to lack what you would consider normal regulation when it comes to sharing. Don’t believe me? Read my blog. IRL, I tend to be the same open book I am here – I just put it all out there. You can see where that would make work a bit uncomfortable, can’t you?

In any event, I do have a couple of friends at work with whom I share some common skeletons (or at least closet space for bones of various sorts). One of these friends, Marty, is someone that I have a lot more in common with than either of us would ever admit publicly. Marty is a great source of support for me particularly in the area of drugs. You heard me. Drugs. Marty is one of the few people I can talk to about drug use and be completely understood – he gets it. And when he stopped by for a quick chat and a hug today, I was reminded how much that means to me.

So here goes. I’m going to try to explain to the rest of you what it’s like to be more-or-less regularly reliant on narcotics.

First, notice that I didn’t say “addicted” to narcotics. I do not consider myself an addict and, luckily for me, neither does my doc. I’ll go days/weeks without even thinking about narcotics until I need them. If I don’t need them, I don’t take them. It’s really that simple. Where I behave like an addict, however, is that I *always* know where my drugs are and can get to them quickly. Even when I haven’t taken any in weeks, I still know where the bottle is. Why? Because I do.not.like.pain.

Pain is the driver here. Chronic, unrelenting pain. You know that scale of 1-10 that docs are always asking about (“Where 10 is the worst pain you can imagine”)? Our agreement is that I don’t even try to aim for a 1. In fact, 3 or 4 is the threshold for taking pain meds for me. So even when I’m NOT taking drugs but know exactly where they are, I’m still walking around in pain most of the time. I’m just waiting for the pain to be “bad enough” to do something.

When you talk to most people about narcotics, they think about being stoned or loopy or just plain passing out. This is because narcotics make you sleepy. They’re used as part of the drug protocol for conscious sedation for everything from dental work to outpatient surgery. That makes it hard to talk to people about narcotic use for those of us who rely on them to get through the day. I can’t tell you how many times I’ve had someone ask if I was okay to drive after taking narcotics. Truth be told, I’m often better off with the narcotics than I was without. It’s easier to concentrate with 5mg of oxycodone in my system than it is with a Scale 6 headache. And that doesn’t even take into account that pulling my hair can obstruct my vision!

But there’s more to it than the difference between pain and narcosis. Anyone who has chronic pain can tell you, pain makes you tired. This week I slept 12 hours one night only to fall asleep on my desk the next day. I don’t know why, but pain wears you out.

If you’ve followed me so far, this is where it gets interesting.

Marty dropped in just in time to catch me mid-dilemma: What to do about the pain/fatigue issue. I’m in pain and I’m flat out exhausted. If I take drugs, the pain will get better. This generally would wake me up but if I’ve waited too long then all it will do is take the pain away enough that my body will collapse into the sleep it wants so badly. But if I don’t take something then I deal with pain-induced fatigue and brain fog. And I can take a half dose which might not do anything but might contribute to either of the above and if I get more tired/sleepy after half dose is that because I didn’t take enough or I took too much? Really, at that point is pulling one’s hair easier?

Marty didn’t tell me what to do. He just gave me a hug and told me he understood. And really? That was just what the doctor ordered.

So for my friends out there who suffer with me – and you know who you are – consider yourselves hugged. I understand this is a bitch. We’ll all get through it.

I’ve been seeing a lot of wildlife lately including some quite impressive up close and personal sightings of a fawn or two. It’s always the same – I unexpectedly come up on an unsuspecting creature who neither knows nor cares how interested I am in getting a closer look and at that moment I’m faced with a split-second decision on what to do next. If I keep going exactly as I had been, the encounter will be over as quickly as it began and yet any change in my course of action may draw attention and scare off the timid creature that I am so interested in.

That’s exactly the feeling that i had last night while tucking in Thing 2. She and I were chatting and she made some comment or another about the future. You know, the kind of innocent thing that Mommies and Little Girls talk about at bed time – how she’ll always be my baby even when she’s old enough to have her own babies. It was late, I was ambling along and reflexively came back with a comment about WF. Basically, I asked her if she had this conversation with him, too.

Those of you who do not know Thing 2, allow me to explain that this child is Drama incarnate. Nothing with her is small or insignificant. NOTHING. Her kindergarten teacher once said: “That’s our kid, everything is larger than life!” and that’s about the best summary I’ve heard.

So when Thing 2 very matter-of-factly came back with reply: “No. He’ll be dead too soon to ask him that. Unless they cure cancer he’ll be dead while I’m still a kid.” I froze. Literally. I was afraid to physically move for fear of shattering that moment.

I’d been laboring under the misconception that her silence on the subject meant that she hadn’t absorbed it or had and was just rejecting it. But she very clearly spelled out exactly what her understanding was with chilling accuracy. What is a Pagan Queen to do?

We chatted for a good bit after that. We talked about what she was feeling (a little sad) and how I was there if she wanted to talk about it (she doesn’t) and what kinds of questions she had. She’s the literal child of the two so it shouldn’t surprise me that he questions were very concrete: What happens to WF’s house when he dies? Where does that money go? Do I get to keep the things in my room at his house?

By the end of that I was feeling a bit bolder so we talked about losing my Grandpa when I was 15. I didn’t go into much detail, there’s stuff there that people my age struggle with when they lose a parent as adults that is just plain hard and I still don’t have the heart to warn her. I did tell her that I’d always be there for her and that we’d get through it because I’d always be her Mommy. And that brings us full circle on this conversation.

WF gets home in just over 48 hours. It will do Thing 2 good to have him back and it will do me good to be able to talk to him about some of this stuff and see if we can get on the same page. Because right now, I’m starting to feel like the deer in the headlights myself. I know this is coming and I’m powerless to stop it. I’m not sure what I can do to prepare myself or my girls for the trauma and I suspect that WF isn’t prepared to talk about that at all. I’m not sure I could if I were him.

But this week as I was trying to wrap my brain around how I would ever manage to get us through this, I turned on the radio and heard an ad for the local Hospice. WF isn’t ready for Hospice care at this point by any stretch of the imagination but I wonder if it wouldn’t be worth talking to the folks there who, sadly, have more experience with children in these circumstances than I do. A little information might just save us all from becoming road kill.

I’m officially “that” age. That age when a woman wears Spanx not because she wants to look hawt but because it’s less conspicuous than ACE wrap and still fills the need to squeeze all the aching spots that need to be squeezed. At least until the Advil kicks in.

Now if you’ll excuse me, I’m going to go shop for support hose.

Two weeks of vacation flew by as fast as an airplane over the north Atlantic. I’m home and have been for a couple of days now. No, I haven’t forgotten to update y’all on the trip – that entry is being drafted/crafted slowly. But there’s something else on my mind today that needs to get out of my head.

When traveling, Pagan Queens and others should remember to take their medications as directed. A six hour time shift really messes with that and when you’re dealing with a drug that causes fatigue when the dose is adjusted then it can be tricky. The end result of this exercise in mental mathematics is that I’m off on my Diamox dose and have been for at least a week. My head is KILLING me. Throw in some jet lag, a little PMS and eye of newt and I don’t think my current mood requires much explanation. So take that as the backdrop for the little drama that unfolds in the rest of this post.

I’m still getting settled into the routine of being home. Thing 1 leaves this week for a month so I have her for less than a week – and that’s after not having seen her for a month. She’s grown. Seriously. And I hate that I missed it. Thing 2 has oral surgery tomorrow. My baby has four teeth that will be coming out including one that is impacted. I’m scared for her and I keep acting like this is no big deal just so that she’ll not freak out. We’re going shopping today for mushy foods and ice cream. I don’t know which one of us is going to feel worse!

Of course, drama started before we ever got home. We were in the airport still when we found out that Iggy’s girls weren’t sure they wanted to be here for all of their scheduled visitation.¬† So Iggy’s mood isn’t all that great either. The difference between how he’s taking it and how I’m taking it is that I blame Stepford for this. She didn’t want Iggy to have this much time with his daughters to begin with and so here we are with the girls telling him that they don’t think they can stand to be away from Stepford that long. Coincidence?

We’ve now put the scenery on the stage. Let’s add the action.

There’s a family wedding in Iggy’s family next weekend that we’re supposed to attend. “We” in this case being defined as Iggy and his girls, me and Thing 2. We’re driving 16 hours up and 16 hours back and going to the wedding on the day in between. Why might this be less than fun?

1. It’s a wedding. Weddings and I have a long history given that I’ve had a few. The trouble is that in recent years my feelings toward weddings has become rather, well, fractured. On the one hand, I look at the happy couple and want to scream “RUN” at the top of my lungs. On the other hand, I look at the happy couple and see two people who are happy and content and will have the kind of life that I will never have. The kind of life that I apparently don’t deserve. So I cry at weddings.
2. This isn’t just any wedding. The wedding will have me dealing with Iggy’s family. They’re a good bunch – big, close Midwestern family. With pictures of Stepford up all over the place. Iggy and Stepford’s wedding, Iggy and Stepford dating, Stepford all decked out for a night out. The photos of Stepford and their girls I understand. But the others, I don’t get for so many reasons. Why has Iggy never had a problem with these? If my family had photos of WF and I up, I’d have asked them to take them down before I was even dating again. But Iggy doesn’t care. His love life with Stepford is documented on the walls for all to see and he’s fine with that.
3. They’re a Midwestern Family. Some of you know that I’m from one of those. One that is within an hour of Iggy’s family. I’ve asked Iggy before for details of the wedding weekend and haven’t gotten them. I’ve asked Iggy for details of when his girls are here this summer and haven’t gotten those either. This makes it hard for me to plan anything that I’d like to do – say, see my sister after a 16 hours drive.

But at the end of it all, what had me crying myself to sleep is something my mother said years ago when I was divorcing Chuckles. She pointed out that he “doesn’t smoke, doesn’t drink and doesn’t beat you” so she didn’t understand the need for a divorce. At the time, that seemed silly. Death threats aside, I was young and wanted to believe that there was more to life and relationships that not being beaten by a sober guy with clean breath.

Times have changed. I’m 42 years old. I’m not getting any younger. Or prettier. Insert a refrain from “That Girl” and you’ve got my mood. I’m not the girl that anyone has ever looked at and said “I see forever in your eyes” – at least not and still meant it the next morning. At this point in my life, no one is ever going to have my wedding pictures hanging in their home to remind them of how happy their son had been. I have no realistic chance of ever being first in anyone’s life other than my own. So when looking for a partner, maybe the bar I’ve set is a bit too high. And maybe, just maybe, I’m holding myself to a higher standard than I need to as well.

Or maybe this is all just a really bad headache with overtones of PMS and I just need a little TLC once in a while.

The results are in. CIN I – Mild Dysplasia – with clear margins. Save yourself the Google search. That means that the cells were pre-cancerous and that they got them all out.

YEAH!!

My eyes are so dry. Sure, the pollen count has been high and I could blame allergies if I’d like. But I have another explanation.

I’ve had my eyes pried open and looking up at all the balls I’m trying to keep in the air – terrified of blinking for fear of dropping something. Now, I’m pretty fair at multitasking if I do say so myself, but I’m feeling a bit stretched. Maybe I’m getting old and tired. But I have this feeling of dread that if one more person adds one more thing to the mix I’m going to lose my grip on everything. So I’m keeping my eyes glued on all the bits up in the air and trying to keep them all moving.

But just for a moment, just here and now, I’d like to play a little pretend game. Let’s pretend that I just walked away. *POOF* What’s the worst thing that would happen? A lot of folks would be pretty upset. A lot of things wouldn’t get done. But all the critical ones would get done eventually and people are upset now so that part is a wash.

So if that’s the case, then perhaps it’s time for me to start looking at exactly what is up in the air right now. Because from where I’m standing it is beginning to feel like some of these things could be dropped – by me – and left for someone else to pick up the pieces.

Maybe, just maybe, this is why both ACOA and CoDA have been mentioned to me in the last two weeks in different settings? A little subliminal advertising from the Goddess?

Page 2

Just in case you thought the fact had escaped my notice, what with all the balls in the air, I am aware of the fact that it has been three months since the last entry. It has also been pointed out to me that an update on the health issues mentioned last time might be in order. So, running through the body systems in question:

Boob: The surgeon wasn’t impressed by what he saw on the ultrasound and wanted to see me again in July for a repeat ultrasound. Basically, he thought it looked benign and that was good enough for me.

Butt: I slept through the garden hose and the biopsy was negative. We’ve modified my diet and that seems to have solved things. I’ve done the appropriate controls and added back in the removed items one at a time to confirm that, yes, my body does in fact HATE certain things that badly.

Girlie Bits: I know. Not part of the original post. The Pap came back abnormal. Colposcopy showed an area too large to take a little biopsy of so I went in for a LEEP last week. At this point I’m waiting impatiently for the pathology report. I was told 7-10 days and it has now been 10. OK, I counted calendar days, they may have meant something else. But I’M NOT PATIENT! I’ll post something when I have the results. My guess it will be after the point where I am allowed to lift 15# again (Thursday) but before I’m allowed to go swimming (a month). Argh.

I’m not going to whine. At least that’s what I keep telling myself and what I’m going to tell y’all now. I am NOT going to whine.

I’m just going to ponder for a spell the trials and tribulations of getting older, the joy of statistics and the agony of medical non-compliance. What do those topics all have in common? Me.

A little over two years ago I turned 40. Several things happened then – I had a party, the warranty ran out on the core body systems, and generally my health went to hell. The funny thing is that I was looking forward to 40 so I can’t even blame this on the placebo effect. My “problem” birthdays have always been the “9′s”. Something about the anticipation of the next decade is worse than the actual change. Thirty-nine wasn’t much different so I was kinda grooving on the idea of turning forty. I hear it’s the new twenty.

Shortly after the clock struck 4-0, I was diagnosed with IIH. Well, not shortly. It took nearly six months to get to the diagnosis but the first MRI was right after 40. I had a total of four MRI scans that year – all brain. Seriously, they need a punch card for that because I should have gotten a discount on the fifth (taken at the ripe old age of 41).

But I digress. 

IIH won’t kill me, in fact the worst things it can do are to take my vision (30% chance) or give me pain that doesn’t respond well to pain killers (already there). I can live with that, and I do. I see my Neurologist regularly and she tweeks my meds. Sometimes we have to have difficult conversations about side effects that I just cannot live with but generally it’s not bad. For this little issue, I take a total of 10 pills a day. Which brings us to the topic of medical non-compliance.

As a physician one of the more frustrating issues is patients who just will not take their med or follow a plan to help themselves. In this post-40 world I find myself embedded in that camp – playing the role of the patient who is just sick and tired of being sick and tired and taking over 10 pills a day. I find myself wondering what would happen if I just went on strike and quit. Stopped taking everything. Don’t worry, I know better. The part of me that lived through the last spinal tap off meds is still sitting over in the corner rocking back and forth having flashbacks of wanting to jump under a bus because the pain was so bad. So I won’t do it but from here, I can sure see how people could end up not taking their medications as prescribed.

At this point, if you’re still here, you’re wondering why I’m whining about an issue that’s been going on for two years. The simple answer is that I’m not whining, I’m settng a backdrop. A backdrop for my more recent adventures in Health Hell.

Not taking my meds means living in really bad pain. Taking my meds means my gut is in a perpetual state of angry. So any “complaint” related to my gut for the last 18 months has been blamed on my medications. That worked fine for quite a while until the complaint involved actual blood loss. At that point it became harder to blame it on meds. Nope. Time to bypass my Neurologist and go back to my Primary Doc and come up with a plan.

This did not thrill me. I know enough about medicine to know that a plan under these circumstances would involve a Gastroenterologist and a hose. And I was right. What I neglected to think about is that my Primary Doc is a damn good doc. So going to chat with her about this one issue wasn’t going to work in March when I was due for a Pap in January. Nope. She wasn’t going to let me off the hook that easily.

Paps don’t bother me. Maybe it’s because I’ve done them (10 years at a free clinic and I can say I lost count) or maybe it’s because I just refuse to let them. What does bother me is when Doc quits joking and gets serious. Particularly when she’s feeling up my boobs. And telling me there’s a lump.

So at this point, I’ve seen the GI doc and have a date scheduled with a hose (in about 3 weeks) and I’ve had both my mammogram and my ultrasound which confirm a 6mm lump that needs to be biopsied. And I still know too much. I know that my gut is likely giving me grief from a mild case of colitis that will be diagnosed with biopsy taken through the hose and treated with…….more pills! And I know that the chance of this lump containing cancer is only about 2% so taking some of it out is really more for my mental health than my physical health. And I know that statistics don’t mean jack for any individual. And that my mental health needs to know. And that I’m sick of finding things wrong. And that stopping all my meds and pretending none of this ever happened may not be the answer, but right now it’s sure tempting.

Every once in a while (ok, about six times an hour) something strikes me as funny for no good reason. This not only got me but got me enough to want to share.

Breast Cancer is serious business and I support research in all of it’s forms. I just have to question why the NIH or NCI isn’t directing the Congressionally appropriated research funds. What is the DoD doing with their hand in this? Do I really need them to defend my boobies?

According to the National Breast Cancer Coalition I do. They say:

Without a doubt, the DOD BCRP has funded important breast cancer
research that simply would not have been funded elsewhere. The most
significant example so far has been the research that led to the
understanding of the gene, HER2/neu, which is involved in the
progression of some breast cancers. This research ultimately led to the
development of the drug Herceptin®, a drug that has been shown to
extend the lives of women with HER2/neu-positive breast cancer.

NBCCF has been the driving force behind the DOD BCRP since its
inception. NBCCF’s role in the DOD BCRP represents an unprecedented
working relationship between advocates and researchers. This program
has been recognized around the world as an important new research model
with many innovative features. In its 1997 review of the DOD BCRP, the
Institute of Medicine commended the program and stated, “The program
fills a unique niche among public and private funding sources for
cancer research. It is not duplicative of other programs and is a
promising vehicle for forging new ideas and scientific breakthroughs in
the nation’s fight against breast cancer.” Grassroots advocates lobby
yearly to assure reallocation of funds to continue the work of the DOD
BCRP.

Again, I’m confused. Why would this research have not been funded elsewhere? Are other government agencies really that nonchalant about genetic markers for cancer? Since when does the NCI not take an interest in the development of new cancer therapies?

Call me skeptical, and I am, but I think that the “fight” against breast cancer doesn’t need to be fought by the people who brought us Abu Ghraib. I don’t mean that we should turn down research funding, just that I question the logic of who we leave holding the purse strings. I mean, my itty bitty titties would feel safer if the research funding wasn’t being allocated by the same folks who brought us Tailhook. 

Biased? You bet. But their my boobies and I’m picky about who defends them.

I do not feel well. Actually, I feel fine but my gut disagrees and we’ve been in a hostage situation for the last day or so. I know exactly why we’re locked in conflict, and that does not make it any easier because that means that I know there really isn’t anything I can do about it and I just have to wait it out. This is all related to the recent increase in Diamox. That is my wonder drug, the one that saves me from pain that would make me want to throw myself under a bus. But at doses over a gram a day, it is also the drug that makes my gut more pissed off than a cat who just fell into a toilet. Yes, every pun intended.

I know that things will “cool” off eventually so honestly, I don’t feel bad. I can handle this so long as no one minds my frequent Olympic-worthy sprints to the women’s bathroom. But there’s the rub.

They do mind. The folks I work with have been, shall we say, less than understanding about my illness. It’s a chronic condition and I understand that those can be hard to wrap your brains around but for crying out loud!! Where do I work again??? Too bad they don’t believe in compassion.

Every time I have “trouble” like this – something as simple as my gut being mad enough that I need to sit at my desk with a hot pack and sprint to the loo every hour – there’s this general sense of panic. The two concerns that get leveled at me are that I’m going to miss work and that I can’t handle my job. Well, folks, if I miss work would someone explain to me how that is the end of the world? Generally, if I “miss” work I’m lying in bed (or on the bathroom floor) at home with my laptop – get this – working. And I think that pretty much takes care of concern #2 – if I couldn’t handle my job then I wouldn’t be doing it and there would have been more complaints.

So on the walk in this morning, between stops on the tour of every bathroom on this side of grounds, I got to thinking. If I had identical symptoms for other reasons the reaction would be 180 degrees different. I had a thyroid ultrasound on Friday (it was fine, thank you for asking) – couldn’t I just let “slip” that I had an ultrasound on Friday. That combined with the trips to the WC would give the rumor mill food for a month. And, best of all, it would get folks off my case.

Too bad I believe in honesty.