08/31/2012: Where'd August go?

This year has flown by.  Just flown.  Poof.  Gone.

Weird.

So that's not really why I want to blog, so let's move on.

Yesterday I wrote a blog about this quack I'm working with.  I suppose I seem quacky myself going through the trouble of seeing this specialist (neuro-GI) and then completely disregarding his opinion.  And yes, that doesn't sit well with me.  Nothing about how things are going with this specialist (neuro-GI) sits well with me.  I couldn't quite pin down why but writing it out yesterday, I now get it.  And I now feel very secure in my line of thinking as well as that I can and should articulate this with the specialist (surgeon).

Prior to writing that out yesterday, I was just going to keep my thoughts to myself.  I basically figured that somehow not talking to the specialist (surgeon) was going to help me get what I need.  That's laughable - and is a big part of why this whole thing just seems wrong.  Being able to sort things out, though, helped.

I am a writer and I am a thinker but thinking by itself doesn't always get me from A - B.  Sometimes I have to write out my thoughts to truly understand what my thoughts are telling me.  Yesterday's blog was a prime example.  I don't know if you noticed but I went from starting with the man is a quack to actually understanding his point and appreciating his theory.

Wait.  What?

How can I think he's a quack and appreciate his theory?  And truth is, at the start of my writing yesterday, there was no appreciation. At the end, I'm not so sure the man is a quack.

What I am sure of is that he is thinking inside of a box.  Boxes and science rarely mix well.

Here's the blurb that helped me the most - and then I'll explain why this means so much to me today.

And don't you get that, quack man?  If we knew what caused endo, don't you think we'd be closer to a preventative treatment or maybe even a cure?  But we can't seem to find that cure, can't seem to find that preventative treatment, can't seem to find that way to stop endo from growing let alone happening.  Because while one woman exhibits symptoms A, B, and C, and responds to treatment X, another exhibits A, C, and D and responds to treatment Y.  Specialist doc gets that, that multiple women show multiple levels of progress through multiple treatments.  My pain doc gets that.  My ob/gyn gets that, my PCP gets that, my urogynecologist gets that.  But here I am working with this guy who is supposed to understand endo and be able to help with it and he's so stuck on himself that he can't see the forest for the trees!  It's all different you quack!  Yes, there are similarities but like pregnancy, every woman's body handles it differently.

Yes, there is anger here, too.  It is beyond frustrating that I, the patient, don't matter to this man.  That proving his theory is all he is after.  I do suppose I'll back off calling him a quack, though.  Because when I google this guy there is nothing but appreciation for him.  He does help a lot of women.  Just because he isn't helping me doesn't give me license to be a bitch.

So what does this mean to me today?  Or even last night, talking to Husby?

It means I feel confident in talking to doc-specialist about why I don't feel I should be pressed to continue working with this guy.  Here it is in a nutshell.

Neuro-GI guy believes that women have endometriosis because of an improper ability of the body affected to handle insulin.  To take that further, he believes that insulin - either through a sensitivity or a flat-out resistance - causes the intestines to spasm which is the source of all of the pain.

Neuro-GI guy and doc-specialist work hand in hand.  They also work with a third surgeon who typically does colon resections if those are warranted.  This trio have worked together for years and through their various angles are able to get women relief from endo.  Sometimes it's for a year, sometimes it's for 5 years, sometimes it's for 8 years, sometimes it's for 6 months.  It varies.  Endo is something that is different for every woman and while one woman needs a colon resection, a drastic change to her diet, and major "clean up" of endo, another woman might "only" need major "clean up" and a minor diet change, a third woman might only need clean up, and finally, a fourth woman might only need a change to the diet.

Doc-specialist believes that I might (might) have had a successful surgery back in March.  If I did, the fact that I'm still in pain means my diet is bad as well as that I probably have issues with insulin.  So he is trying to prove that one way or the other before cutting on me.

What I know now is that doc-specialist is pretty much on the needs-another-surgery side of the fence.  Maybe still technically on the fence, but he definitely is leaning that way.  Why do I think that?  Because he went ahead and ordered his pre-op tests so those would be out of the way by the time I see him next.  If he were truly on the fence and/or leaning to I-already-had-a-good-surgery, I don't think he'd have ordered those tests.  So, working with neuro-GI guy is the final proof, one way or the other.

Neuro-GI guy asked Weds when surgery is scheduled for.  So even he knows that he's not really helping me.

My problem with Neuro-GI guys treatment of me is that in spite of the tests stating otherwise, he's stating I'm still all screwed up and that somehow I'm getting my bloodwork to lie, getting the EEG machine to lie, and lying myself about things like regularity.  So since I'm all full of lies, he's just going to treat me.  But he's messing around with hormones.  He's tried to give me one hormone that should I start taking it, even though my natural balance is just fine, my body will stop making that hormone and I could end up on this med for life.  There is nothing warranting that med.  I'm just supposed to take it because he knows best.

How do you trust someone that isn't really watching out for longterm well-being?  I don't want to be on meds forever.  I don't want to turn any of this very real problem into even more real problems.

As I've stated, my diet isn't my issue.  Even neuro-GI guy could agree to that on Weds.

Initially I was scared to go back and tell doc-specialist he has me working with a quack.  And because of anger, yes, I probably would use poor terminology like that.

I'm not scared of that anymore, though.  I guess 1) because I'm past the anger with this guy and 2) I can now articulate exactly what my problem is.  And my problem is this, in a nutshell.

Neuro-GI thinks in a box.  He assumes because I have endo (which he's proven) that I should exist in this box that he thinks in.  But the problem is, I don't have the other issues he commonly sees with endo.  I don't have the abnormal insulin levels, the abnormal blood sugar levels, the crazy active intestinal tract, or the inability to process natural foods.  I am outside of his box.  And instead of seeing what that means and adapting, he's just getting mad at me and literally calling me a liar.

How do you get bloodwork to lie?
How do you get an EEG machine to lie?

I will be candid with doc-specialist.

I don't think my frustration levels are helped by the fact that neuro-GI guy just wants to sell me his products. I heard again on Weds that my flaxseed oil is no good since I don't buy it from them.  I also heard that my body cannot process any flaxseed oil other than what they sell because only they have the right production process; but last month the excuse was only they have "real" flaxseed oil, what I have is probably synthetic.  No, neuro-GI guy doesn't make this stuff himself, he buys it from another company and resells it.  I also heard that my body cannot possibly break down omega-3's so I should only be getting omega-9's.  When I asked why my body could not break down omega-3's I was told I wouldn't understand since I'm not a doctor.

Alright.  You're right.  A BS in Oceanography, a BS in Geology, minors in Physics, Chemistry and Math - you're right - I can't possibly figure anything out.  I'm dumb.  I get it.  You're right.  Thank you for being there to lead me oh great doc.  I tell anyone I'm a Geophysicist and common response is "oh wow".  Even docs, those who bother to ask, greet that with "oh wow" - and I, of course, say "oh wow" to docs.  But this guy...

I don't do blind following well....

To add a frustrating side trip to an already frustrating journey is hard.  Pain doesn't make these things more tolerable...

Sigh.

But I gotta give the love.  Tessie Rose took the time to tell me her thoughts about yesterday's blog and that means the world to me.  Thank you so much, Tessie Rose!  And I agree completely.  Thankfully, writing out yesterday's blog helped me see that - which is precisely why I blog.

08/30/2012: When it's ok to call it

Sometimes shite happens.  Sometimes it is to me, sometimes it is to you, sometimes it is to the company you work for, sometimes it is to the company I work for, sometimes it is to some unknown entity.  But shite happens.

Shite happened to my company today.

I arrived at work a bit later than normal - nearly 9:30.  I got logged into my desktop and was all set to work.  I'd pulled up my email and perused it, I'd pulled up my Google Chrome and set up my personal pages I like to have open through the day.  I'd pulled up my various software applications I need to do my job and I was checking something for being able to work from home when suddenly my computer froze.

Thinking nothing of it, assuming it was dangling daemons from yesterday's mishaps, I rebooted my machine and headed off to look for a new notepad to use.  I ran into my project leader, aka boss man, and he says "oh, you are here".  Well, yeah.  If I'm not coming in, I call.  We have flex hours so it doesn't matter that I'm late so long as I stay my 8.  Nothing else comes of that conversation until he starts to follow me back to my office.  He asked if I'd logged in yet and I said yeah, but I'm rebooting cause my machine froze.

And that's when he said it.  Someone inadvertently disconnected a main UPS for our building this morning.  It took down our entire computer system killing everything possible in the process.  We have the 6th largest computer in the world here...so this is not a trivial computer system.  It takes many many HOURS to bring it back up.

The earliest we might be able to get to work is 2pm.

And yet...they are making us sit here anyway.  I don't get it.  The day is shot.  Let.  Us.  Go.

I'm leaving at 4.  In spite of coming in late'ish, that has to be the plan as we are taking friends to the airport on the way home.  Friends who are also coworkers.  Going on vacation, trying to finish things up before leaving - and the day is shot.  She can't come back tomorrow and try to finish things up - she'll be out of state.  What a waste.

Let.  Us.  Go.

It's ok to call it done.  Cause it's done.  So call it.  Let.  Us.  Go.

But they won't.  And whereas tomorrow might have been a half day due to a holiday weekend, I'm sure we'll now have to stay the day to make up for work that didn't and won't get done today.

Ugh.  Just call it!

In other news... I saw the quack doc again yesterday.  Still a quack.

Here's the rundown.

Me (M) talking with the nurse (N) first...

• N: What meds are you on?  Still on x, y, and z?
• M:  Yes, and add a, b, and c.
• Of course, truth is, I'm not taking the meds the quack prescribed for me.  I did try them for a couple of days and they didn't do anything for the pain.  I also know - as quack himself told me - that they won't stop the endo from growing.  All they did was make me beyond sleepy.  For the days I took this shite and I couldn't keep myself awake at my desk that day, or while driving to my Husby after work that day.  One of the meds has a half life of 40 hours so it took forever to get out of my system!  If it does nothing to alleviate pain, does nothing for endo, and makes me a hazard, NO, I'm not gonna take it.  But I gotta appease this quack somehow.  So yes, I lied.  And at the end of the day, I don't care about this quack and his quack treatments.  I  know that red wine is not my issue.  I'm not drinking any alcohol let alone red wine.  I just gotta get through this time and get back to the specialist - whom I see in less than three weeks now.
• N: How's it going with X?
• X is birth control
• M: In spite of being on X in a manner that should stop my period, I got my period anyway.
• N:  Oh.  Ok.  Then take more.  If you get your period again, take more and keeping taking more and more until your period stops.  Then take less.
• My period runs three days.  By the time I've taken more and more to stop my period, my period would be over anyway!
• M:  Ok.  I'll do that.
• NOT!  Seriously?  Just take more hormones?  And expect good things to happen to my body?  Really?
• N:  How is the pain on a scale of 1-10?
• M: without the pain meds I hang around between 7-8 but with pain meds I can get down to a 4.
• quack doesn't think I should need pain meds if I don't drink red wine.
• N: So you are taking the pain meds?
• M: Yes.
• we covered that back with the x, y, and z, and add a, b, and c convo.
• The nurse then takes my blood pressure, temp and pulse.  Very good all the way around.  She was shocked I have good blood pressure.  She started by asking "do we need to use the large cuff on you or do most people use the normal?"  Yes, I'm fat - but not that fat.  Looking at her - shoulda said what do you use?  'Cause you're bigger than me.  She used the normal and made sure to exaggerate how much she had to secure the cuff velcro because she was certain it would just pop off when pressure was applied.  No.  My arms are not that big.  Just ugh.  She pumped it way the hell up, too, because she was certain I'd be in the 180 range.  No...I sit around 120 dingbat.  120/60.  Sometimes 110.  Get over yourself.
• With that done and shock that I had good BP and a low body temp and a calm pulse she just suddenly gets up and walks out.
• In walks doc.  Here's the conversation I (M) had with quack man (D).
• D: Did N go over your meds and update this?
• M: Yes.
• D: You are taking these meds?
• M: Yes.
• D: What meds are you taking?
• M: x, y, z, a, b, and c.
• D: Are you sure?
• M: Yes.
• D: How'd y and z go for you?  
• M: Made me tired as all get out.
• D:  Ok.  Can I add more?
• M: No.  I already fall asleep at my desk.
• D: Ok.  Then I'll add magnesium.  It's a supplement I sell.
• imagine that - you want me to buy more of your products.
• M: Is it a prescription?  Because I can't afford any of your supplements I have to pay out of pocket for.
• read, I am not spending any more of my own money on your quackiness
• D: Oh, so you have insurance that covers prescriptions?
• M: Yes.
• D:  Ok.  Then I'm going to put you on metformin and give you a blood sugar monitor.
• M: Why?
• D: Because you are sensitive to insulin. He then pulls out bloodwork results.  
• He had me do a 5-hour glucose tolerance test.  And he was also testing insulin.  In this test, I did the normal baseline, drank the drink, then they took blood 1/2 hour later, 1 hour later, 2 hours later, 3 hours later, 4 hours later and 5 hours later.  I had bruises like crazy after that test and the lab called back a week later and said everything had been labeled wrong and I'd need to repeat the test.  I said no.  I had to take a vacation day to do that test and I wasn't doing that again - had no vacation left, either, so not really an option.  Lady on the phone tells me I can do a Saturday.  I said I see my boys on weekends and a few hours each night.  I was not giving up an entire Saturday to redo this test given I don't believe this is doing anything for me.  She laughed and agreed.  Said this doc was a quack because of course my glucose and insulin were going to be whacky after a glucose tolerance test that spanned 5 hours that was fasting to begin with.  If I'd had normal readings at 5 hours that would mean something was wrong, not that abnormal (low) readings at 5 hours meant something was wrong.
• D: Baseline was good.  
• I started this test at 10:40am.  I'd been fasting since midnight night before - although last time I ate was at 9.
• D: 1/2 hour was 122 
• D: 1 hour was 128
• D: 2 hours was 98
• D: 3 hours was 94
• D: 4 hours was 85
• D: 5 hours was 69
• D: So see, you are all screwed up.  Anything below 70 is insulin sensitive, he says.
• He has a poster in his waiting area that claims that his threshold for what he's claiming is insulin sensitive is 65 and below.   
• And, the 5 hour test, given that the test started at 10:40 am, the 5 hour test was drawn at 3:40. I'd gone nearly 16 hours without drinking anything (other than the sugar drink for the test) and the last thing I'd had to eat was at 9 pm the night before - so nearly 19 hours without any food.  Yeah - something should have been wrong!
• D: Since you are screwed up I'm going to fix you.
• Doc looks through my chart again, reads the letter he wrote to the specialist who referred me to this quack then looks at my graphs from the EEG he did that proves I have endometriosis but does not prove that I have intestinal issues.
• D: Oh, you are the one that still functions correctly in spite of having endometriosis.  Well, that doesn't happen.  You have to be insulin sensitive.  I've proven that most women with endo are.  So you need my help.  When is Doc specialist doing surgery?
• M: I don't know that he is.  He wanted me to work with you for 8 weeks then we'd discuss surgery if I wasn't getting relief from my pain.  I see him again Sep 19.
• D:  Ok.  Yeah, let's do the metformin and blood sugar monitoring for 12 weeks and I'll see you in 2 months and you can let me know what Doc specialist is doing next time I see you.
• He then shuffles me out of the office and scurries off before I could ask one single question.

The main question I had is what diagnosis is this quack making to insurance?  Because you can't call me a diabetic.  The right test wasn't run to do so and to put it frankly, I am not diabetic.  I don't want this quack reporting quack diagnoses to my insurance company!

I did ask the nurse who was checking me out and she assured me - he hadn't checked off diabetic on the form she had in her hands and this was going to be reported as preventative.  If I've done this monitoring for a month and can prove reasonable blood sugar levels for that duration it won't get reported as diabetes or even pre-diabetic.  I'm incredibly worried about this quack doing something quacky and me ending up with a "pre-existing condition".  I have no plans of changing jobs and getting new insurance but one never knows.  Nothing is certain in life and I will be beyond mad if this quack causes problems for me in the future.

I made Husby go with me for moral support this time.  He couldn't believe the level of quackiness.  He told me he agrees with the lies I told, though; that I have to do what I have to do to appease this man so that specialist doc can cross his 't's and dot his 'i's .  I believe specialist doc has to do this for insurance sake and probably even for his own peace of mind.  Surgery just to do surgery without any other remedies tried is a horrible approach to take.  It should be the last resort and I appreciate that.

So now I get to prick my fingers for awhile.  I only have to do this twice a day, one in the morning, fasting before breakfast.  And one in the afternoon, two hours after eating lunch.  Husby thinks I should do a couple days worth to see what we see and then fudge the numbers.  He thinks I should not fill the prescription for the extra lancets and extra strips.  I do have to admit a bit of curiosity here, though.  My dad died from diabetes - so I don't take this disease lightly.  And I can appreciate monitoring myself to see problems before they get bad enough to truly be diabetes.  This could be a blessing for me in the future.  I don't hate that I have this tool now.  Diabetes scares the bejesus out of me. I do not want to go there.  And as much as I think this man is a quack, given that my dad had diabetes, I can see that, yes, it's not improbable that there probably is something fishy with my insulin levels and it's probably harmless right now but it might not be forever.  It does suck that the lab screwed that up - but for the three results they did get on insulin, I was definitely normal and good.  

I just don't get his mindset, though - well, the tests show you are normal but I'm going to treat you for being abnormal anyway.  He did that with his own abdominal EEG last time.  And he has now done it with labwork he ordered.  Why run the tests if you don't believe the results?

It's weird, though.  I can find a gazillion reviews of this man and the specialist I've found and I seem to be the only one balking at his quackiness.  I guess most women do have abnormal EEG results and do show insulin resistance or sensitivity.  He does have a theory, he's not the only author on the papers, either, and his theory does seem to hold true for most women with endo.  It just isn't holding for me.  In spite of that, though, instead of seeing me as an individual, he still wants to clump me in with these other women.

I do believe endo is genetic.  My mom had it, my aunt had it, I'm sure if my grandmother had ever griped about her cramps and whatnot we'd know she had it but her generation was not allowed to be vocal like we are.  My aunt only discovered it because it affected her fertility.  My mom only discovered it because of a fluke.  I've lived for 22 years without being affected by it but now, following my pregnancy, it's gone wild.  And no, it's not entirely true I wasn't affected but it wasn't "bad enough" to make me seek help...to really be adamant about getting help.  Yes, I mentioned painful cramps whenever I could.  And yes, I missed work and even school because of being so badly in pain sometimes that I just could not get out of bed.  But, in general, it affected me 1-2 days a month when I had cramps.  Not like now, where it affects me every second of every minute of every hour of every day of every week of every month.  This is new.  And no, my insulin levels didn't suddenly change.  Nor did my bodies ability to process sugar.  In the span of this ordeal I've gone from eating like crap to eating well again.  And in doing that change, I went from pain for two weeks to pain all the time.  So if this was tied to my diet, you'd think I'd have done the opposite - seen the pain get alleviated by fixing the diet.

I believe his theory has merit.  But it does not explain everyone.  And instead of adapting and seeing that what applies to one doesn't apply to all, he's just going to overlook me and claim I'm lying.  Yeah.  You're right.  I can make my blood lie.  You're right, your own EEG test that tells you so much about other women, I made it lie about me.  Your own test, you tell me, proves I have the disease.  But it's not proving that I have it for the same reason as most other women you see.

And don't you get that, quack man?  If we knew what caused endo, don't you think we'd be closer to a preventative treatment or maybe even a cure?  But we can't seem to find that cure, can't seem to find that preventative treatment, can't seem to find that way to stop endo from growing let alone happening.  Because while one woman exhibits symptoms A, B, and C, and responds to treatment X, another exhibits A, C, and D and responds to treatment Y.  Specialist doc gets that, that multiple women show multiple levels of progress through multiple treatments.  My pain doc gets that.  My ob/gyn gets that, my PCP gets that, my urogynecologist gets that.  But here I am working with this guy who is supposed to understand endo and be able to help with it and he's so stuck on himself that he can't see the forest for the trees!  It's all different you quack!  Yes, there are similarities but like pregnancy, every woman's body handles it differently.

I guess some peace of mind should come from knowing I have an endocrinologist following me right now and he recently tested insulin and he was quite pleased with the result I had.  

I am thinking to not take the metformin.  Just like I'm not taking the anti-seizure med he gave me or the crazy antihistamine that is meant to be a sedative.  In googling metformin, it doesn't help with endo and actually stimulates ovulation.  RE's use it in conjunction with Clomid to get women to ovulate and possibly release more than one egg.  Ovulation sends my pain over the moon.  So why would I do this?  Husby thinks I shouldn't - thoughts?  Take a few and see?

Ugh.  Just ugh.

I'm so gonna hate it I go see specialist man in 20 days to find out he won't/can't help me.  I am just so scared of where this journey is taking me...

08/29/2012: Cause I want to again

I'm about to have a meeting and I should be preparing but I don't want to so I'm not.  It's lunch time and so I'm doing something cathartic for me in hopes that this will help me get my brain wrapped around this meeting I don't want to do.

My boss, my bosses boss, my bosses bosses boss, and my lead tech will all be in this meeting.  I'm this goofy little peon and I have to present to all these peeps.  Usually it's just my boss and my lead tech.  I don't like the notion of the bosses boss but I'm not so worried about him.  It's the bosses bosses boss that I am finding myself a bit whelmed by.  He's a great guy.  But he's never attended any of my meetings because I'm just a peon.

He's going to make 2 decisions today about the work I've been doing for the past 2 months or so.  And either all of my work will continue forward or it will all stop or one will continue and one will stop or vice versa.  But he might effectively say "everything you've done sucks" in which case I would cry.  Or he might say "you're so awesome, do the first thing 2 ways and do the second thing 3 ways".  I could end up with no work whatsoever or I could end up with more work than I can handle.  All while I'm also supposed to be working on my project that will get me a hefty payraise.

That project seems to have been sidelined lately.  Wah.  Me wants payraise!

Oh well.  It'll get done.  And payraise will get got.

And boss man will either be happy or not but either way, I'm pleased with where I am and I know I can say I've been working hard on these two tasks when most others on my team are only working on one thing at a time.

In other news...I'm losing weight.

I want to know how I get my band completely deflated and yet I'm still tight as a bell...wait - are bells tight? - ok...tight as tight can be...maybe that makes more sense...and more unable now to eat certain foods than I was before the unfill a month or so ago.  How is a completely deflated band still effective?

I know the answer. I  keep forgetting it, though, because it's so weird, but just typing that out above reminded me of the answer so now I'm good.

(If you want the answer, I believe it is because of all of the inflammation in my belly from the endo.)

I went to pick up the boys from daycare last night.  They were the last two in the baby room - my babies are now the oldest in their room.  Crazy!  How'd they get old enough to be the oldest in something?  Weird!

Anywho, they were the last two and our favorite teacher was sitting on the floor letting them crawl all over her.  They love her and that's awesome to me!  So their crawling all over her and she saw me through the window and I just smiled at her.  I stood there a few minutes watching them have a blast, listening to them laugh and giggle.  She tried to get them to look at the door but they were having too much fun.  They'd climb on her then slide down, hit her legs, stand back up, climb back up and so on and so forth.  After a few minutes of her prompting them to look at the door and them not doing so, I finally opened the door a crack and just put my head through the door.  And Green took off crawling like he could run.  It was so unbelievably awesome.  I walked a couple steps to him and picked him up where we met and he just grabbed onto me so hard and gave me the biggest hug.

O.M.G.

Blue, however, couldn't be bothered.  He wanted to keep sliding down the teacher.  So she picked him up and turned him to face me.  Once he saw me, his face just lit up with the hugest smile ever!

So amazing!

The previous two oldest kids moved up to the next classroom effective on Monday of this week and two new babies started.  One baby is 9 months old and the other is 7 weeks old.  Both moms are teachers and so their first day coincided with the start of school.  Well, previously when new babies have started in that room, Blue and Green haven't given it a seconds thought.  But this week...it seems to have really affected them!  Teach told us on Monday that she wasn't able to hold Blue or Green all day long because she had to hold the 7-week old.  Makes sense to Husby and I.  But Blue and Green don't really agree with that.  Yesterday she said they did better.  They did take naps - which they didn't do on Monday.  And Teach made an effort to hold them both, so I think that helped, too.  Husby and I both think that, oddly, being the last in the classroom yesterday really helped.  They did get that one-on-one time with Teach and they definitely love her dearly.  Once we got them home Monday night you'd never know they thought they'd had a bad day.  They were happy as can be with us and they certainly know they are not competing for attention from us.  But it still sucks to think they had a bad day.  It's nice to know, though, that they adjusted yesterday and I hope that adjustment holds and improves from here on.  I want them having only good days!

(I know that's not life, but they're too young for life to be smacking them around, I think.)

Ok.  That is all.  Short one from me today.  But I got to get to this meeting I don't want to get to...

Happy Hump Day, Y'all!

08/27/2012: Just cause I want to...

How was your weekend, y'all?

Mine?  Not too shabby.  So this'll be a two-parter.  Good fun part first.

So Blue and Green are awesome.  Have I told you that lately?  I wish I had a picture from this weekend to add to the post but I don't.  I'll get a few taken this week to share.

Somewhere along the line Green has decided I am the most amazing thing ever!  It seemed for awhile that Blue thought I was the most awesomist person in his life.  He would search for me and wanted to be as close to me as possible at all times.  But he wasn't distraught if he wasn't.  It seemed that perfect balance of pure love and admiration and willingness to have fun when I wasn't around.  We bonded somewhere around 8 months.  It's Green's turn now.

I'd read before they were born that the depth of your love for your babies isn't immediately there.  I didn't know what to expect, to be honest.  Would they be born and I'd suddenly see stars because of being pure, over-the-moon, blissfully happy in love?  Or would it just be.  It seems, from what I read, very few experience that pure, over-the-moon, blissfully happy in love right there in the delivery room.  Most take time to really get attached.  Very very few feel no connection at all.  Which is a good thing.  I think I would have been devastated if my heart didn't explode when I held and met my boys for the first time.

But it's weird.  The chaos of the day of their birth does kind of detract from everything.  My water broke at 1:30am, I was at the hospital by 3am, then spent 2 hours on a monitor to be told nothing was going to happen until my Ob arrived.  He came in at 6am and declared I'd be a c-section and heaven only knew how long I was going to have to wait since it was non-emergent.  Finally, an OR was available at 9am.  45 minutes later, I'd been sliced open and two babies were then unceremoniously yanked out of my belly.  I had a horrible reaction to the spinal - I'd been given BOTH a spinal AND an epidural.  And it was all I could do to keep myself awake for their birth.  Once they were taken out of the OR to go to transitions for a full check-up - and Husby went with them - I did conk out.  I was out of it!

I finally got back to my L&D room around 10:30 and still no babies to be found.  Somewhere around 11:30 it was decided that all was well and I could meet them.  But, I was still in the L&D room.  I was moved to a regular postpartum room around noon and in all the fuss to get settled and checked up by the nurses who would be tending to me, things like "meeting my babies" were still on the back burner.  Finally around 2pm, I think, that was when the nursery finally brought them in and I was finally allowed to hold them.  I was exhausted, mentally and physically, and grandma and grandpa were hovering over me to hold them as well.  Husby also wanted his chance - although, of course, he'd already had a chance in the OR.  But there was this push to hold my babies, look in their eyes - if their eyes were open, which they were - then pass them on.  And really, all I could think was I just wanted a nap.  Get out of my room, visitors, was what I was thinking.  (Of course, the boys were not "visitors".  That was for grandma and grandpa.  A set of Godparents were also with us that whole day and I wasn't even hellbent on chasing them out.  Just grandma and grandpa...)

Nonetheless, holding Blue and Green was beyond awesome!  There was the trick - how do you hold TWO newborns at the same time?  It's easier in the dominant hand to hold a baby than it is in the "weaker" hand - and how do you choose who to hold first given that I do have two hands and I can figure it out.  But other than that momentary "yikes"...nothing will ever compare to that moment.

Until around about 8 months.  When Blue decided I rocked.  It was the most amazing thing when he decided he loved me.  And it's odd.  You just know.  You know that they've gone from seeing you as a caregiver to seeing you as this amazing person who holds a gazillion answers in her hands.  You know they now see you as comfort and peace and fun and happiness in addition to food and water and basic needs.  When Blue decided I rocked fireworks were shooting off in my heart every time he looked at me and smiled.  And he seemed to love what he saw because he did that every chance he could - and he still does.  It is beyond amazing that all I have to do is walk in the room and he will instantaneously be happy and peaceful.

And now.  At 10 months.  When Green is so incredibly attached to me.  The only thing I can do wrong, in his eyes, is put him down/walk away from him.  This morning, trying to get ready to leave for the day I had to put him down for a minute.  Husby was in the kitchen putting lunches together and I'd been feeding Blue and Green.  They were done eating so I put them down to play to go start a load of laundry using the wonderful delay feature.  As I walked away from Green you'd have thought the world was about to end.  So I picked him back up and just took him with me.  Since Blue has already been through this, he seemed to just know and appreciate so he just seems to say "whatevs" and continues on playing.  I love love love that Blue and Green have each others backs like that.  They just know where the other one is, in space and in mind-frame, and they just help each other out - or stay out of each others' ways.  It's just amazing!  But you'd think starting laundry - collecting laundry and then setting up the machine and getting detergent and whatnot in the right bins might be tricky holding a baby.  Nope.  Not Green.  He has this amazing heart melting thing he's doing that goes along with showing me he thinks I'm awesome.  He hugs me.  One little arm around my left shoulder (I hold them on my left hip, if I just have one in my arms) with the hand completely clenched shut around whatever fabric makes up my sleeve.  And the other little arm around my neck with that little hand completely clenched shut around hair or fabric or even skin if there's nothing else to grab onto.  And with two little hands clenched around whatever they can be, the little head nuzzles into my shoulder and he just stays there.  He'll lean back periodically and catch my eyes and just smile - and then nuzzle all over again.

O.  M.  G.

When I'm questioning parenting in about 13 years - I want to remember THIS.  Because THIS is perfection!

When I'm devastated that my baby boys are grown up and going off to college - I want to remember THIS. And then I want to be glad that they are finally old enough that we can be friends.

There's part of me that can't wait for that day.  When the parenting is not the focus and the relationship is.

I knew how awesome that relationship can be with my mom.  My greatest hope of all is that one day in the future, my boys and I can be there, too!

Every day I think "I can't possibly love them anymore than I do today, right now".  And then it happens.  More.  Deeper.  Even more incredible than the last second.  And it's true.  I love them more and more every day - and that's saying a ton because I already love them more than the air that I breathe - and I have since the moment I knew they were growing in my belly.

So there's my good fun awesome part.

Now for my bad ugly horrible part.

Want some news?

Ready?

Endometriosis sucks.

Surprised?

Well, in a weird turn of events....

About a month ago I met a specialist in endometriosis.  He does a type of surgery most ob/gyns won't do.  His thing at the end of the appointment was to try less radical fixes for 8 weeks and see if we could get me some relief without surgery.  And if that didn't work, we'd discuss surgery at my next appt - which is in about 3 more weeks.  Well, over the past month, I've wound up scared to death that he's just going to tell me no surgery, can't help you.  So here's the weird turn of events.

Last week I had to do an MRI and a weird sort of x-ray.  The MRI was of my abdomen.  I'll start there.

I did an MRI of my abdomen.

Ok...moving on.

Next was the x-ray.

Ok, backtracking a bit...they stuck me with an IV for these two images/tests.  That was fun.  The first time she stuck me - she missed the vein.  Rolled right away.  I warned her and everything but she didn't believe me, I guess.  That was an attempt in the elbow region.  Next she tried on the inside of my wrist.  She stuck me - and then stuck the IV straight on through the vein so that when she tried to aspirate and then inject a smidge to ensure she had the vein, she blew the vein out.  THAT HURT.  And it still does.  Just yesterday the bruise finally started to form.  Ugh.  She didn't try the third time.  She had a nurse come in to do it - and he got it on the first shot.  Just ugh.

So, anywho, there I was with this IV.  They did a contrast for the MRI.  And then again for this weird x-ray. The contrast for the x-ray, I was told, would go straight to my kidneys to be filtered out.  They'd get a bunch of x-rays taking one every so often to see where the ureters, kidneys, bladder and urethra are.  Ok...that's interesting, I think.  Not so sure what that has to do with endometriosis, but whatever, the doc knows what he wants.

I'd been assuming the MRI and this x-ray both were to see if scar tissue from the endo is now thick enough to image.  Endo doesn't image at all, they say, but I've also heard that when it's REALLY bad the scar tissue can be thick enough to show up on imaging.  So there I was assuming that was the goal of these tests, to see if I'm "bad enough" yet.

So once she gets everything going and had the radiologist in agreement that we had a good baseline for me (before the contrast was injected) she asks "when's your surgery?"  I said "I don't know, not sure there will be one, doc wanted to give 'other treatments' a try for 8 weeks before talking about surgery".  She said "this doc doesn't order these tests unless he's doing surgery.  The purpose of these are to get the lay of the land so that he knows where he can cut and where he needs to avoid.  These are always done just prior to surgery."

That is really good news to me.  Can you believe that?

I must be on drugs or something...thinking surgery sounds like good news...

But it is!

The "other treatments" I am trying...nothing.  Member the quack doc post?  Well, his quack treatment is doing NOTHING.  A big fat ugly emphatic NOTHING.  Which is no surprise to me.  It's not my diet, folks. I have to see this quack again on Weds and I'm gonna go in there and say "you made a lot of assumptions about what I was eating".  I will tell him that yes, I did stop eating bananas, but that's the extent of what I had  to change to be doing this diet.  And no, my pain is no better.  And yes, in fact, it is worse.  That's all it ever does it get worse.

I am off the pain patches but the pain is going crazy so still working with the pain specialist and probably going to add those back.  And keep on with the lortab to supplement.

I want to be off drugs.  I'm sick of them.  I do not like this.  I miss my life.  I miss feeling good and having energy and being able to do what I want.  It's so ironic that here I am with all this perfection around me and I have to deal with this.  I really really really just want to not.  I want to move on!

Which is why surgery seems like good news.  If this surgeon does his specialty on me, I should feel better.  I should get relief.  I should turn the proverbial corner and get a respite from this for a good while.  No, it won't cure it - there is no cure.  And yes, it will come back - and it will continue to do that until I have a hysterectomy - and it could even come back following a hysterectomy.  But a good surgery - like what this specialist does....that should do more for me than what the "normal" surgery for this did for me.  The normal works for most.  But for the few "lucky" ones, it just makes it worse.  Given that I'm one of those lucky ones, speaks to the level of endo I have.  And that speaks to that I probably will never get out from under this - even following a hysterectomy.  But a good surgery should not aggravate things like the "normal" did for me. And to get it all to quiet down - that would be a good respite.

I have this notion in my head that if I can get it to quiet down - with that good surgery - then it will probably stay quiet until following our next pregnancy.  I have lived with this since I was 14 - that was when I first had a symptom.  It didn't sideline me then.  I did things to keep it in check, unknowingly, yes, as keeping endo in check wasn't the goal, birth control was.  But I was able to keep it in check.  If I can get it back to quiet-ish - which is all it ever was between 14-36 - then I believe I can get it back in check.  And yes, another pregnancy will probably start this all up for me again.

But that's ok.  Because when pink and ivory start in with their hugs...I'll remember why I let it come back/get re-aggravated.  (Yeah, it's gonna be twins again - I'ma gonna will it so.  And yeah, it'll be two girls next time - I'ma gonna will it so, too.  And no, if it doesn't work out that way, I won't be disappointed at all.  Happy and healthy is my true goal.)

So anywho...that's kind of where I am.  Thinking that in about 3 weeks time I'm going to go back to this specialist and he's probably going to say "let's talk surgery".  And I'm gonna say yes please.

Want the science?  (In case you haven't read it elsewhere in my blog or know it some way yourself.)

My "normal" surgery was a laser ablation.  In that, the out of place tissue was burned off.

This good surgery is a resection.  In this, the out of place tissue is painstakingly cut out.

Difference?  Laser ablation is fine if a woman has endometriosis that doesn't go deep into whatever it is connected to.  Problem is, laser ablation literally burns out the bad tissue.  Everything in the vicinity, though, will show burn marks fairly quickly, too, though.  Ever burned a piece of paper?  That which isn't burned is still charred if it had direct contact with what did burn.  Same principle.  Like I said, if there were no roots, if it was all superficial, this works just fine.  Upside - it's quick and relatively inexpensive and it works for 85% of women who have the surgery and it can be done laporscopically.  Downside - for the 15% of women it doesn't work for - it just makes it worse.  Endometriosis loves to grow on scar tissue.  Laser ablation creates scar tissue.  And since the roots are left untouched, it's scar tissue the endometriosis doesn't even have to go searching for.

Problem is - insurance companies pay the same whether it is laser ablation or resection.  Laser ablation is typically done in an hour.  Resection is typically more like six.  If a surgeon does laser ablation, he can do 3-4, sometimes 5 women in one day.  If a surgeon does resection, it's one a day.  If you get paid the same no matter which technique, well, you do the math.  Doesn't make sense to do the resection given that laser ablation works for 85% of women.  So there are very few who do the right way.  But the difference is, laser ablation - it will come back.  Maybe it might be a year, maybe it might be 5.  Resection - if you are the average woman with endo, might actually take care of it.  And if you have advanced endo, resection can still buy you 5 years.

It is curious to me, though. I did some googling yesterday and it appears from blogs and reviews I've found - this surgeon specialist almost always switches from laporoscopic surgery to open surgery.  I think that's an insurance trick.  Open surgery is far more risky and always takes longer - and costs more.

But I don't care.  I'd rather a scar from neck to groin and get this all at the root than leave it in there to grow back again.  Because as I've proven once, it grows in me quickly.  There is a blood marker that gets elevated once you progress into stages 3 and 4 of endo and when that blood marker was last checked on me, it was indicating stage 4.  According to pathology report from my initial surgery I was stage 1.  But I don't believe that the laser ablated sample could have been used for an accurate pathology exam.  It's impossible to get to the root with laser ablation and if he didn't get the sample from start to finish, how would the guy looking through the microscope have known the extent?

Anywho, if it's true...I'll be in the hospital for 4 days.  And I'll be off work for 8 weeks.  And I'll pull the boys out of daycare pretty quickly if that's the case.  A hug from Green and a smile from Blue can help anything recover quickly!  Just a little something for me to look forward to!

Don't worry...I'll keep you posted!  Haha.

Have a great week, y'all!!!

08/17/2012: Let's try some good news today...

I am losing "followers" left and right.  That's sad to me.  I hope life never does to those "friends" what life is doing to my Husby and I right now.

I think what's particularly sad to me is that two of these bloggers are faves of mine.  People I couldn't begin to fathom unfollowing.  People I am friends with on Facebook whom I have had conversations with outside of the blogging realm.  People I love and admire and am inspired by.  But they don't want to follow my blog anymore.  And that just outright hurts.

But then, given that I'm a devil's advocate and I always examine ALL sides of a coin, I understand why, too. Bad news blog in and blog out is just not fun to follow.  I know this blog isn't one that anyone turns to, of late, for light-hearted, good, fun reading.

I would hope, though, that people can stick with me.  If you knew me before I had my babies you know I am not a person who lives life in the dumps.  I can be passionate about what I have an opinion about, but I am not an angry or sad person, by nature.  By nature I am happy, joyful, and as too many have proclaimed is actually a problem in my case - carefree.  I am blamed, in real life, of being many people's source of energy.

I know my health battles suck and I'm sure it's not fun to read.  It's hella not fun to live!  For those of you that are sticking with me - I appreciate that beyond words.  For those that take the time to comment when I do blog a miserable blog - I appreciate that more than you'll ever know and I love you for each comment and each moment in time you take to reach out to me gives me so much more than you know!  So for those still here - just thank you.  Thank you thank you thank you.  And please please please don't abandon me now.  I'll get through this.  Husby'll get through this.  And we'll all get back to our happy go-lightly lives here in Houston and then you'll be back to wishing I'd slow down and chillax a bit!

One blogger out there has heard my voice.  It's a blogger that absolutely hates talking on the phone and so when I call, I send text messages in advance telling her not to answer the phone and that I'm going to leave a message.  Ask her what comes through in my voice.  Then you'll know that the problems of late, the down and out coming through in my writing - that's not me.  And I promise, if that blogger heard my voice today, she'd know, I'm a'ight.

I come here to write.  I usually write raw.  I read it for dumb spelling or grammatical errors, but I don't go overboard with editing.  And then I publish.  It's amazing to read things again a year later.  This is a span of time that I'd rather forget.  But to forget this, I'd have to forget what Blue and Green are up to, too.  So I need this blog to stay real.

Ok, so I said "let's try some good news today".  You ready?

I'm losing weight!  It's awesome!  15 pounds in about 2.5 weeks - which seems like an awful lot.  Basically since my unfill.  My band is completely deflated, you might remember I mentioned that about 2.5 weeks ago.  And it's still pretty snug.  I still have to be pretty cognizant of how I am eating.  But what's nice about the past two and a half weeks is I am not struggling at all to get good food in.  I swear I've been eating good foods for the past nearly three months but the scale continued to climb, anyway.  Since that unfill, though, it's been steadily falling.  And I'm not doing anything different.  It's just falling.  I don't think my eating was ever bad - at least not for the past 3 months.  Prior to that, yes.  But lately, it's been good.  So it was getting depressing that in spite of eating well, I just continued to gain.  Now, without changing anything, just fill level, I'm losing.  That's awesome!

It's nice!  It's giving me a ton of motivation!  We got the gym all cleaned up and I am back to working out.  Last weekend, Friday night, as I was driving home to my Husby and my beautifuls I suddenly had an idea for how to make workouts happen for both Husby and I.

It is important to me that Husby and I are both involved with bedtime.  But who says we both have to do bedtime together?  So that's our answer.  He does bedtime by himself three nights a week.  I do bedtime by myself three nights a week.  And during that chunk of time is when either of us not doing bedtime gets our workout in.  That way we aren't working out at 9pm - which no doubt would leave me unable to sleep for hours.  Instead, we are done with workouts by 8:30.  So still a good chunk of time to get showered and watch a show or whatever it is we want to do to relax.

It's awesome to finally have a plan that's working and lets us both do what we want!  We might play with still doing bedtime jointly Fri-Sun as Fri night we can both get in workouts before bed and since we don't have to worry about what time the alarm is going off on Sat, there's no reason to be worried about what time we are done with working out.  But that's just a flexibility thing.  That's awesome, too - to have some flexibility in this.  That also allows for makeup days if a workout can't happen on a designated night for some reason - and things happen...you know?

Not much else going on with us.  Nothing new with Husby.  He has an appt Monday afternoon but nothing should really change as nothing is really happening right now.  Not much going on with me, either.  Well, wait, I guess that's a lie.  I started taking a birth control pill to make my period stop.  Stopping my period would theoretically give me relief from the endometriosis and, at the very least, stop it from growing anymore.  I am supposed to take the pills that are hormones and throw out the sugar pills that are for the (.) days.  Well, I was two weeks into my first pack and I started my (.).  How do you start a (.) in the middle of a cycle?  No, it wasn't spotting.  It was a full on (.) with full on cramps and full on bloating.  It was a HEAVY (.), too.  So I stopped the BC pills.  I hate jacking with hormones but if I'm going to jack with hormones and still not get the desired result from it, still have to deal with the whole mess I'm already dealing with - well, I'll just deal with my mess and skip that jacking with hormones.  Wouldn't you agree?  I am trying to work with that endo specialist doc to see if he wants to try something else.  But so far, nothing.  I think right now I'm more scared than I've ever been that when I go back to see him mid-Sept he's going to say "I can't help you".  His thinking at the end of the last visit that I had with him was "let's work with this GI [the one I think is a quack] and see if we can fix this by working on what you're eating.  If that doesn't work then we'll visit the idea of surgery when I see you in Sept."  Well, quack's stuff isn't doing a danged thing.  No surprise there.  Other than give me bills because my insurance company doesn't agree with his quackiness.  And surgeon's stuff isn't doing anything either.  Thank God I have my pain specialist.  He's helping.  He took me off the patches because they weren't working.  That's nice!  Oh, and I saw the urogynecologist last week. She seems pretty nice, too.  And helpful.  She does think I have IC (Interstitial Cystitis) and so I get to do some fun bladder tests over the next couple of months to prove it.  Don't know what the fix will be...but...cross that bridge when we get to it.

Anyway, there's my latest.  Not much of anything.  I've never ever had a problem with BC in the past.  I've been on a variety of pills, on depo provera - and nothing has ever caused a problem for me.  I think I've even been on this particular BC in the past.  My body is just sooooo out of whack right now.  It's just beyond bizarre.  I am so ready to put this chapter to rest and move on.

I know I said good news today...but I felt the need to do the update.  And with that out of the way, let me switch to some great stories of Blue and Green.

Green is turning into such a momma's boy.  He sure knows how to melt my heart!  It's becoming a common occurrence for him to crawl to where ever I am standing or sitting.  When he gets to my feet he turns around to sit on his bum.  And then reaches right up for me.  Once in my arms, he grabs hold of my shirt on either shoulder and pulls himself as close as he can and then nuzzles his little head into my shoulder.  It is so sweet.  He'll hold the hug as long as he can.  Daddy was starting to feel a little left out and Green seemed to finally realize that last night so he did that with Daddy a couple times to show him it goes both ways.  That made Daddy smile in a way I've never seen before - and that melted my heart even more.  Finally a little tidbit about Green,  he is definitely going to be our little scientist.  He is so funny!  He has a process with everything he touches.  A very scientific process.  Whatever it is he is picking up, he does these same three things before either playing with it or putting it down and moving onto something else.  He picks the thing up.  He uses all four fingers together, straight out, in a waving motion to see if the thing moves, he's really checking for a spin.  Once he decides that, he then turns it all around - up down side to side - and then shakes it to see if it makes noise.  Finally, he puts it in his mouth to decide if it's good for the teething discomfort.  Once he's done with this process, he'll either play with it for a bit or put it down.  If it responded best to the waving motion thing, he does more of that with his play.  If it responded best to being shaken or whatever, he does more of that with his play.  If it was a teething ring, then he gnaws on that for a bit.  It's just so amazing to me, though, that he has this process with everything he does and he really uses the feedback to determine how best to play.  What's even funnier is Blue will watch him do all this and once he sees what Green figured out, Blue will decide whether he wants to play with it himself.  Most all the toys we have we have two of so Blue will usually get his own.  Sometimes, though, the other isn't easily found and Blue will then decide he needs what Green has and he'll take it. Green usually just says "whatever" and gets a new toy.

Blue, on the other hand, has an entirely different attitude.  When Green takes something from him Blue has no tolerance for that.  I find that hilarious, too.  Such different personalities!  Funnily enough, I'd say Blue is actually the more easy-going baby.  No matter what, they are both very easy-going.  Husby and I are beyond blessed with these guys!!!

Blue is absolutely sweet as can be, too.  He is an instigator, that's for sure, but he likes to make you think he's an angel.  I wish I had seen this one for myself, but I didn't, I heard about it at daycare one day when we picked him up.  I can just see him doing this, though, so I'ma tell the story anyway.   Blue and Green have their own cribs at daycare, of course.  The cribs all line the walls with a great big playroom in the center of the room.  They used to always try to keep Blue and Greens' cribs together.  But about a month ago they had to split them up.  Blue would always reach through the bars and grab at his brother trying to wake him up.  Knowing that Green needed his naps, too, they moved Blue to a different crib.  Well, this week, Blue decided Green had slept enough.  He had gotten up from his nap about 30 minutes before this happened, they said.  They said he just kept looking at Green with a face that said "wake up bro!" but Green would just not wake up.  So eventually Blue crawls himself over to Green's crib.  At this point, everyone is watching to see what he's up to.  He stands at Green's crib and kind of grunts at him.  I don't know what it is with these two, but they do this grunting thing that is hilarious.  It's not a real grunt, but it's like "hunh" with a deep basey voice.  And they'll just go "hunh, hunh, hunh" three times in a row really quickish then be quiet then do it again.  A lot of the time whoever did it first will wait to see if the other responds but sometimes whoever is doing it will do it just to do it.  Anyway, so there is Blue, standing at Green's crib.  And he does this hunh thing.  Green didn't budge.  So Blue did it again, but louder.  Green didn't budge.  So Blue starts trying to shake Green's crib.  Green didn't budge.  At this point, the lead teacher said she told  Blue, "Blue, don't wake your brother up".  Blue looked back at her and smiled.  He then turns back to the crib and shakes it again.  Green still didn't budge.  Teacher again, says "no, don't even think about it."   Blue looks at her again and did his coy smile.  Then, while watching her, he reaches between the bars and grabs Green's pacifier clip.  Green had his pacifier in his mouth.  With the paci clip in hand, teacher says, "Blue, no" as she's walking toward him to move him away and stop him from waking up his brother.  But by the time she got to him, the pacifier had been pulled.  Blue is standing there all proud of himself.  Green's wakes up and starts to cry since he was startled awake.  But then Blue reached right in and put his hand on Green's.  Green's instantly settled and Blue just smiled at him.  They got Green out of his crib, changed him, and set the two loose to play.  They said Blue followed Green around for quite a bit after that.

Last story - yesterday afternoon I had a doc appt.  We got done with the appt, got the boys and were home before I usually even leave from work.  Once home, Husby had to finish some work for work.  I suggested we go swimming and Husby thought that sounded great.  So I got the boys ready while he finished his work.  Once we were all changed and sunscreened up, I went to work loading the dishwasher and put a few things away that have been cluttering our countertops since Husby can't seem to learn where EVERYTHING goes.  While I was loading the dishwasher, Blue and Green's both decided they needed to help.  Husby told them to be careful what they wish for.  Soon enough, they'll get their chore list.

Ok, that's all I got.  I hope everyone has a great weekend!

08/10/2012: Friday Letters

Dear Body:  Please stop this.  I know you've been run through the mill the last two plus years with weightloss then a twin pregnancy and now endometriosis, interstitial cystitis, a staph infection, three surgeries within six months, and just plain being fat again.  I get that you want to be treated right and that you want to be in it for the long haul.  But you gotta give me something to work with.  If all I can do is take pain pills and sleep, I'm not going to be able to help end this cycle.  You are being fed well now.  You are being pampered every day with at least a bath each day.  You need to let me feel better so that we can fix this all.

Dear Husby:  Thank you.  You are my rock.  And you rock.  I know it's hard to watch me suffer but you are doing so with grace.  That, in itself, helps me.  I know there are better days ahead for us both.  I cannot wait to get there.

Dear Blue and Green:  I am more in love with you every day!  I don't know how I lived for 36 years without you.  I know someday you will start to give me a run for my money and somedays will be harder than others.  But right now it's just all beauty.  Blue - I love that you need your brother.  You cannot stand to not know where he is.  You don't have to be beside him doing the same thing, but you absolutely need to know he's ok and that he's accessible.  I love that.  I also love that you like to pretend you don't need anyone else.  You have a softspot for me that gives itself away every time you fight going to sleep.  I love that you let me be special for you.  Green - I love that you think you don't need your brother.  You act like he's an annoyance but when he's apart from you, you search for him more than he does for you - and he searches for you endlessly.  I love that you know you need me.  You have the same softspot for me that your brother does - but you do not try to deny it.  To both Blue and Green, I love that it is so easy to make you laugh.  I love your little laughs and I hope you always are able to find the funny!  It's something I want to make sure to teach you!

Dear Husby's job:  You need Houston.  Knock it off.  You won't be happy just being in Nashville.  There is a reason  you have a center here and that this is the largest center you have.

Dear Husby's cancer:  Go away.  I do not want my Husby to have to have another surgery because of you.  I do not want my Husby to have to deal with any of this.  Just go away.

Dear Cancer of any kind:  Go away.

Dear Summer:  I don't have it in me to enjoy the pool or the great outdoors this year.  So please go away and bring us a beautiful cool front.  I know one is lingering out there.  Let it get to Houston.  It's ok.  We'll welcome it.  I promise!

That is all.  Have a great weekend!

08/07/2012: So tired

• I cannot believe how tired I am.  I mean, the past couple of days, it's all I can do to keep my eyes open.  Sitting at my desk at work I'll suddenly realize I'm asleep as I startle myself awake due to my head falling.  Driving to and from work - Husby driving, not me - he'll be talking to me.  I'll be interested in what he's saying - but I still fall asleep anyway.  It's so bizarre.
• I know pain is exhausting but this is just so weird.  I cannot stay awake for the life of me.  This really sucks.

• I had the cutest thing happen this morning.  So Blue holds his own bottle.  Sometimes it's a battle of wills - I really want to care for him so I'll try to be the bottle holder.  But he's adamant that he can take care of himself, dangit.  Green, on the other hand, will not hold his own bottle.  He absolutely wants to be taken care of at all times.  So this morning, Husby had already seen to getting Blue and Green up and dressed.  He had them out in the living room and Blue had "eaten" as much as he wanted and had moved onto playing.  Green apparently didn't want Daddy to feed him, so he just let all the formula pool up in his mouth and then would spit it out every once in awhile.  So Daddy moved onto making our smoothies.  When I came out, Husby asked me to see if Green would eat more.  So I got Green onto the couch on a boppy pillow and held his bottle for him.  He drank and drank and drank.  Right about now Green is such a momma's boy.  Not too long ago, Green was the independent one and Blue was the momma's boy.  It's so funny/cute/interesting how quickly it changes.  But, like I said, Green is a momma's boy right now.  So there I am holding his bottle for him as he drinks and drinks and drinks.  He decided he wanted a break from drinking so he pushed the bottle away.  He then sits himself up and from there, grabs onto my shoulder and pulls himself to a stand.  Once standing, he then threw his arms around me for a great big ol hug.  I had no choice but to actually pick him up, of course, and he just nuzzled his little head into my shoulder.  He stayed like that for a few seconds then leaned back.  Once he had eye contact, he just smiled this perfect adorable smile.  Then he put his head back down for a little while longer.  After a couple minutes of that, he leaned back away from me so that he was basically putting himself back on his boppy and he then wanted more of his formula.  It was so incredibly sweet and special!
• These are the things that help me the most right now!

• Husby was supposed to do his radioactive iodine treatment at the end of last week.  That would have been the exclamation point to finish his treatment.  Thyroid cancer is "the best cancer to get, if you have to get cancer".  We hear that sentence, word for word, from just about every doctor we see.  It's because they can give you radioactive iodine (I-131).  Thyroid cells are the only cells in the body that use iodine.  So when thyroid cells take up I-131, they ultimately commit suicide and wah-lah, cancer cells be gone.  But it didn't happen.
• About two weeks ago he had an appt with his oncological endocrinologist.  She reviewed lab results with him.  One result that should have been next to nil was actually around 50 and that was causing a bit of concern.  So they had him go in about a week and a half ago for an ultrasound.  During the ultrasound they did find some tissue that was questionable in the area where the thyroid used to be.  So they biopsied it.  It turned out to not be cancerous so that was good news.
• He was supposed to get the I-131 treatment last thurs.  Prior to that, on Weds, they wanted to repeat bloodwork and do another type of image - an iodine uptake scan.  They use a less radioactive iodine for that and see where it accumulates.  It would be the baseline for determining if the I-131 treatment was effective.  He went in Weds to get that pill and give his blood.  Then back Thurs for the scan as they allow the iodine to do what it's going to do for 24 hours before seeing where it went with a gamma scanner.  Leaving the scan, everyone was happy with the results.  However, we then went to meet with his oncological endocrinologist.  And she said "No I-131 for you."
• There's too much tissue left in his thyroid bed.  The amount of tissue that is still there would take up most all of the I-131 and that really should be used up by the remnant cancer cells, not normal thyroid tissue.  So he'll have to have another surgery.  They need to wait about three more months to let everything really heal from his first surgery.  Following that second surgery, then they'll do the I-131.

• And now Husby has the staph infection I had a couple weeks ago.  Still waiting on the culture to come back to see if it's MRSA or not, but it probably is.
• Sigh.

• We both seem to be in this ridiculous hurry up and wait phase.  I am so scared that nothing will happen with me.  I am so scared that I'm going to be told to "just deal with it".  I hate that I have to wait 6 more weeks to find out whatever it is that I'm going to find out.

• Tomorrow is my birthday.  I don't want to do anything at all.  I just want to sleep.

• In final news, I had to replace the one pair of jeans that I had that actually fit as they developed a hole in the inside thigh.  The new jeans = the largest size I've ever had to purchase.  I am bigger now than I was at my absolute heaviest weight prior to getting the lap-band.  It's so weird to weigh less than I did at my heaviest but be bigger.  Various docs/rnp's/pa's have been commenting lately how rigid my belly is - and they then explain that's a result of swelling and inflammation.  My poor body.  I've actually started to lose weight, oddly, since getting that emergency unfill last week.  I'm losing weight and yet my body is still growing.  These endometrial tumors are such a nuisance in addition to being incredibly painful.

• I guess this is all for now.  I need sleep...I've been awake for twenty minutes now and that seems/feels like far too long...

08/01/2012: I met the quackiest of the quacks today!

I met a very quackie quack doctor today.  I think all that I can do is laugh about this appt because being mad at the waste of time and money is NOT going to be productive for me.  Hard to find peace with a horrible journey when mad.  So I laugh.  And I laugh HARD because this quack was quackier than even the quackiest of quacks could ever be.  I don't think quack even comes close to describing the level of his quackiness!

I'm trying to see how many ways I can use the word quack.  Seems a lot.

Anywho, here's my funny story.

Yesterday I posted a blog.  In that blog I mentioned that I am working with an endometriosis specialist.  He, in turn, works with a number of other specialists to ensure we are getting at the endo from every possible direction.  This specialist specializes in a special type of surgery that is especially beneficial for people with severe endometriosis.

I'm on a role, aren't I?

Odds are this specialist will do surgery on me, using his special surgical skills.  But he has to try to do things that might relieve my pain without surgery first.  I'm not sure why.  To appease insurance is my guess.  But who knows.  He didn't say, I didn't ask.

This specialist gave my husband and I a tutorial on endometriosis and why his technique is best.  In this tutorial he gave us an analogy.  The analogy is this.  My abdomen is a lake.  Endometriosis is a tree on the shore of the lake.  The tree sheds leaves all over the abdomen creating a "dirty lake".  This surgeon can clean up all the leaves.  But he can't clean the water.  The GI he works with does that.  It's not enough to just clean the leaves off the surface, the water needs to be cleaned, too.  It's also not enough to just remove the uterus - the roots of the tree.  If you don't clean out all the leaves, they will continue to make the water dirty.

Ok, so there's the nitty-gritty of the analogy.

I think what he's doing is seeing if this GI can fix the water based on the notion that my first surgery was successful.  And if the GI can't fix the water, then he'll know the first surgery was NOT successful.  So I get to tolerate at least eight more weeks of pain to prove that.

Somehow I know that the first surgery wasn't successful.  I know that because of the difference between laser ablation and excision.  Like I said yesterday, I don't even think I was staged correctly and that's a result of an unsuccessful surgery.

This GI thinks that if I eat right, I will no longer have endometriosis.  In a nutshell, the endo is causing my intestines to spasm.  And by eating right I can stop those spasms and therefore the endo.

Hmmm...

I am a bandster.  I might not eat right 100% of the time, but I mostly do.  But I'm skipping ahead...

I know there is nothing wrong with my large or small intestines.  I just do.  I know they aren't spasming.  I know they are literally stuck because endometriosis is pretty sticky.  It binds things together that are actually meant to be moving freely.  I have places where my colon is stuck to my uterus, places where my colon is stuck to my colon, places where my intestines are stuck to my liver, etc.  If there is spasming it's because this organ that should move freely simply isn't allowed to because of the endo.  And until that endo gets cleaned up, that's actually just gonna get worse.

I do agree that cleaning the leaves off the surface isn't enough.  But I was pretty sure prior to today that I have a very healthy intestinal tract.  I've had a colonoscopy and an endoscopy since this ordeal started and all was well.  What we don't want to have happen is for the endo to perforate the colon by allowing one of those tumors, a leaf, to grow too wildly.  And the longer we wait to clean up the leaves, the more likely that is.

Ok, so introduce quack.

He has an ECG technique to monitor the intestines.  He has studied over 5000 women, both with and without endometriosis and has figured out how to get an ECG to tell him about a women's intestinal health.  Women with endometriosis would have a hyperactive intestinal tract.  And once he proves that, he then puts you on a low glycemic diet and supplements with different things and uses meds to alleviate pain that won't cause blockage.

I had alarm bells going off before I even met him.

A bandster diet is typically not high glycemic.
A GI that uses supplements to get vitamins and minerals?  Really?  A GI above any other physician would know that the best way for the body to get vitamins and minerals is through food.  Most all of what is ingested through pills and potions is NOT taken up by the intestines.  It's not natural.
But I can see using meds that don't cause constipation...

So I go in today.  I met with the doc.  Absolutely no personality.  But he's a GI.  What would anyone expect?   I have a GI following me that I like.  He's young and nice and personable and charming.  I've never met another like him, though.  GI's are just weird by nature.  So, ok, that is what it is.  He takes my history.  He didn't believe me when he asked if about my regularity and I said "I'm quite regular but do run into swinging back and forth from diarrhea to constipation around the time that I start my (.).  But that lasts two days as my (.) ramps up and then I'm back to normal. I've been like that forever.  He literally didn't believe me.  Said I was lying and was doing myself no good by doing so.

Get over yourself doc.

But it gets better.  Oh does it get better.  There were a few other things where he simply didn't believe me.

Seriously?  Why would I lie?  I'm actually paying for this appt since he's out of network for me.  That should have been my first clue.  Cigna, my ins co, won't work with him because he's a quack!

We eventually get done with the history and he has me move to the exam table.  He palpitates every square inch of my belly and notes I'm particularly tender and in extreme pain.

Thank.  I coulda told you that but you'd have said I was lying!

From there I went to do the electrical test.  His nurse put three electrodes on my belly.  I had to lay perfectly still for 15 minutes while a baseline was established.  So I slept.  Following those 15 minutes, I drank a half a cup of water.  I then had to lay perfectly still for another 30 minutes as actual measurements were taken which should indicate my intestinal health.

I should tell  you here that he is the only doctor in the world that does this test.  He's rather proud of that.  Funny.  I see that as a lack of support for his quackiness.  If he was truly onto something, other practitioners would be picking up his techniques, would be wanting to learn from him.  But no one is.

So with the test done...I go back to the exam room.  I was on pins and needles to hear what he'd have to say.  I honestly didn't know what to expect.  I mean, I know my intestines are healthy and function just fine.  But I also know I have endo and my endo is causing me a lot of problems.  I don't think for a second, though, that my pain is coming from spasms.  My pain is coming from my ovaries, from my uterus, from excessive inflammation.  But spasms?  Not so much.

He finally came in.  And he was mad at me.  I mean MAD!  He puts the graphs in front of me.  He shows me what a healthy intestinal tract should look like.  Then he shows me mine.  It matches.  He told me that was improbable, surely my intestines are why I'm experiencing such pain.  So he effectively doesn't believe his own test.

I think I am  blowing his theory out of the water.  I think his theory doesn't hold steady across the board which would explain why other practitioners are not picking this up.  I think that some women do have poor intestinal health along with endometriosis but that the two are not necessarily related.  Can be.  But not always.  And fixing the intestines isn't always, in fact isn't usually going to fix endo.

So he shows me the next graph.  It's four on one sheet.  Showing serotonin uptake, general electrical activity of the whole body - stuff like that.  I'm well within the range for all of the above.  Again, MAD at me.
M.  A.  D.

Finally, he shows me one that is a measurement of the stomach vs the intestines.  My stomach was showing normal rhythms.  My intestines were showing an increase in effort.  He said that absolutely indicates endometriosis and that my intestines are definitely stuck together in places.

But it's not the spasms he claimed I'd have.  His own theory supports that yes, I do have endo.  But no, my large and small intestines are not my problem.  They've been affected but they aren't the problem.

But then it gets real quacky.

He's going to treat me for a spasming intestinal tract anyway.  A benzodiazepan (like valium only weaker) and an antihistamine that should promote serotonin uptake.  He also wants me to take a liquid mineral supplement as well as a daily vitamin that does not have iron.

Sigh.  So expensive.  But sadly, I have to do this to prove to the surgeon what I already know.

I know this could count as a self-fulfilling prophecy, but all of this is not going to fix me.  I guess I even want it to be a self-fulfilling prophecy because I do need to get to the real solution which is that specialized surgery.

I go back to him in 4 weeks.  I have to prove I've not eaten any of their "do not eat" foods.  I have to prove I have done what they've told me.  And after 4 weeks, they'll readjust as needed and send a recommendation to the surgeon.  I see him again in about 7 weeks now.

It's just quacky.  How does a GI support supplements over natural sources of vitamins and minerals?  He's telling me I can never ever ever eat a banana again.  Bananas will kill me, he claims.  So will red meat.  And corn and carrots and red wine.  Can you imagine a life of not a single glass of red wine ever?

And it's funny.  I realized after I got back to my husband who was off at his own appts...I did that exercise back in June of trying to not eat out.  We didn't succeed completely but we sure did get our eating sorted out.  I've been doing this diet, effectively, since then.  And guess what.  Since June...my pain has intensified exponentially.  I went from only having pain 2 weeks out of a 4 week cycle to every damned day.  And that was while eating better.  I don't cook from a box or a can or a bag.  I cook with real ingredients, real fruits, real veggies - nothing canned, preserved or otherwise.

Sigh.

A quack, I tell you, a quack.

We shall see where this goes.

That's all I can do right now...