keep it down in there

12 07 2010

My gastro-intestinal system is very emo right now.  I’ve spent the last few nights dreaming that I was pregnant and doing a c-section on myself.  That would be kind of difficult being I lack a uterus and all but this kind of cramping is TERRIBLE.  It’s like my intestines decided that since I haven’t had a period in a year that they’d send me some cramps and nausea for good time’s sake.  It even joined up with my nervous system to throw in barrels of cold sweats, arrhythmia, and blue lips.  There’s a party in my tummy and the police just broke it up for being too wild.

I couldn’t keep down anything at all.  Not even the nausea meds so off to the doctor I went for the second time this week.  So what do you do for throwing up for so long your body has gone into SNRI withdrawal?  A big shot of nausea meds in the ass, a dissolvable pill and a firm order to keep down the effexor.  Today is a bit better but I still feel as if I’m buried under a pile of rusty screen doors.

The overwhelming depression seems to be easier today.  I just feel so emotionless – so flat.  I’ve been working on this blog post for 5 days now because by the time I’ve written something, I just don’t see the point in publishing it.

I did learn something this weekend while looking up how to fix this withdrawal.  The pharm companies call it “discontinuation syndrome” instead of “you’re so addicted your body is FUCKED for 10 days.”  They say that because your brain doesn’t crave the medicine like it would for coming off of a narcotic that it’s not really an addiction.  It’s a dependency.  The pharm companies also neglected to say that the half-life of effexor is between 5 and 10 hours so missing even a single dose will send your body into withdrawal.

As long as I’ve been on this med at such a high dose, when I switched to a different med my body shut down.  Even though the meds didn’t work for me any longer the “discontinuation syndrome” tried to kill me.  So now I’m on a plan to start up the new meds while taking the old meds at the same time, then once I’m on the full dose of savella, I’ll start weaning off the effexor titty.

I just want to function.  I want to do something productive.  I want my children to remember more about me than that I’m sick a lot.  I’ll be 30 in 6 months and I feel like I’ve reached and passed the apex of my life.  The depression is chemical too so I’m trying not to put too much weight on how I’m feeling.

All I can do is wait on this new med regimen to work and then go from there.  I’m also mega dosing on B and D vitamins because SSRIs and SNRIs leach those vitamins from your body and as long as I’ve been barfing, I know my body is craving nutrients.

Today, I’ll make it through today.  Tomorrow, I’ll make it through that too.



17 05 2010

It’s almost officially summertime in the South.  Just as I was putting the groceries in the car it started to sprinkle.  The drops were heavy and hot, just like the air.  During the five minute trip home, the storm went from flash flood torrents to a steady, soaking rain.  Getting the groceries out of the car, both Ethan and I were soaked through.  I had hoped to wear my cute outfit until Shaun got home but nature thwarted me.

I dressed up a bit this morning for my cardiologist appointment.  I wore my BCBG jeans, a tissue style v-neck shirt, and my favorite Ann Taylor t-strap wedges.  I even put on makeup.  The first time I see a new doctor, I try not to look too much like a country bumpkin or a soccer mom.  I want their impression to be of a smart and able grown woman.

The second or third time I see a doctor, I don’t care as much if I show up in my normal suburban casual style – soft capris and a tank top.  I normally have a hat on too because I try not to pay attention to my hair on days I don’t have to.  Basically, I don’t mind if they see me in my normal state of disrepair once they know I’m not an idiot.

Today I dressed up to see a new cardiologist.  I don’t like him enough yet to say “my” cardiologist.  Shaun mentioned that just because of his profession, he started out in my view of him with a big black mark against him.  Really, if my – yes MY rheumatologist – hadn’t insisted, I wouldn’t have seen this one.

It’s not that I hate cardiologists in general, it’s just that the science hasn’t caught up to a point to where they can help me.  I do the tests.  I try their meds.  I change my lifestyle.  They tell me that “once I know what it is, I’ll feel better.”  I’ve known what it is for over 10 years and I still don’t feel better.

This guy was ok – he seemed a few years older than me and when he came into the room, he introduced himself to Ethan and shook his hand.  It was adorable!  The entire staff loved on the little man and that made it much more comfortable for me to not have to worry about him being in the way.  Some doctors really do mind having kids in the room.

The doctor seemed to brush off my concerns about the tachychardia and the “syncopal episodes” that have become more frequent.  My first EKG of the day showed that my pulse was 110 at its lowest and the rhythm was “within range.”  He told me that if I felt funny in the future, the best thing to do was lay down on the floor so I didn’t fall when I passed out.  Yes, thanks, that’s very helpful, Doctor.  I think you’d like to meet the administrator at my old school who said that if a kid hits you, to take off your glasses and curl up in a ball and scream for a teacher.  Suggestions like that are TOTALLY plausible.

In my medical history, I had mentioned very clearly that I have a bunch of dead relatives who died sitting up.  They were otherwise young and healthy but they couldn’t fall during the “syncopal event” and their hearts never kicked back in.  This happened to my dad when he was just a few years older than I am right now and the only reason he got a diagnosis and a pacemaker was because it happened in front of a nurse as he was being discharged from the hospital.

I think I have a right to be worried.  The doctor today told me that I was not my dad or my relatives and I shouldn’t be scared over nothing.  I don’t happen to think it’s nothing and I told him that.  My genetics are the perfect storm of potential heart issues – every person on my mom’s side has MVP with dysautonomia which is now being shown to be very similar to neurocardiogenic syncope.  He scheduled another echo which was done today, another EKG – I’m in the running for the most EKGs in a year – and a tilt table test on Friday.  I don’t think he would have scheduled the tilt table test if my rheumatologist, my primary care, and my mother had all demanded it.  I have no plan to scare the shit out of my kids the way my dad scared me.  If I have this, I’d rather they stopped my heart while attached to monitors with doctors in the room.  I don’t even know when I’ll get the results from today’s ultrasound.  I figure I’ll call on Wednesday if no one calls me.

On Saturday, I went to Walmart by myself.  It was the first time I’d been out of the house for a length of time in weeks.  I’ve had a lot of bad days lately but last week I made it through an entire week without needing Shaun to stay home and I felt brave enough to go out by myself.

While I was out, I saw LJs teacher and we chatted for a moment in the bathroom supply aisle.  About 30 minutes later, she walked up to me in the little girls’ section (yay, clearance racks!) and said “I am so envious of you.  You’re out shopping in peace and have time to look!  You just look so relaxed and refreshed!”  I made the normal thanks, and thank God for my husband who watched the kids pleasantries and we parted ways again.

It’s so weird to me that people envy me.  It seems so odd because I LIVE in my body and everything I have has been fought for.  Nothing has ever come easy.  It’s only this quirk of genetics that brought me this auto-immune disorder that makes my body regenerate incredibly quickly.  I see former classmates of mine and they look 10 and 15 years older than I do.  Lifes’ struggles show on their bodies and on their faces.  They have visible lines that tell of battles fought and of hardships overcome.

My skin doesn’t sag or show sun damage.  I can’t even keep my ears pierced because my body heals so quickly.  My body is still firm and all my lady bits are in the place God originally put them.  I weigh 10 lbs more than I did when I had my hysterectomy but it only amplified my boobs and butt.  My hair grows over an inch a month and my fingernails are almost always naturally long.

I have three gorgeous, healthy, and smart children.  LJ looks like me in his build.  Chickpea and Ethan are the spitting image of Shaun.  On the outside, we have the perfect little suburban life.

People envy that.  They don’t know that my body attacks every invader, whether it be a dissolvable stitch or a fetus.  They don’t know that I have almost every side effect to every medication.  They don’t know about being a foster parent or about adoption.  They think I’m overprotective or concerned about nothing when I parent my children differently.

I really don’t think other people are any more blessed or lucky than I am and my family is.  They’ve fought different battles and walked different roads.  It’s just weird to me that some people spend time being envious of others.  I don’t think it’s bad or anything, just different.

I would rather people look at me and think “it is possible to overcome what I’m going through.”

Psalm 129

“Many a time they have afflicted me from my youth,”
Let Israel now say—
“Many a time they have afflicted me from my youth;
Yet they have not prevailed against me.
The plowers plowed on my back;
They made their furrows long.”
The LORD is righteous;
He has cut in pieces the cords of the wicked.

train of thought

21 12 2009

Looking back over my blog, I’m realizing how helpful it is to have the ability to tell when certain things happened.  I’m having to document my medical history again (this time for a rheumatologist) and I can actually give dates.  Otherwise it would look like “a little while back I hurt very badly and it lasted for a… while.”

Reading back, I get reminded about stuff like “wow, that was THIS year?  I don’t remember that at all!”

One thing that has really stood out is that I’ve forgotten my personal policy of looking at the blessings instead of the wishes.  Wishing doesn’t make anything worse but my own mindset – I’m a happier person when I focus on the end result and the blessings that come from getting there.  I don’t do so well with goals.  It seems like setting a goal is the quickest way for me to either instantly succeed (so I don’t have to pay attention to it anymore) or to rebel against doing it (so I don’t have to pay attention to it.  )

I know my personality and I’ve always been this way.  I’m better at doing than trying.  (Thank you, Yoda.)  I have yet to find a motivational idea that works more than once for me.  A paper chain where I tore off a link every 1k words worked for NaNo in 2006.  It never worked again.  Writing prompts work for about a week – I can’t make it through an entire month of prompts.  Book lists work until I encounter a book that I’d have to consume massive amounts of alcohol to read.  365 days to a goal books never work to make me read the Bible in a year, clean up clutter, stay inspired, make art, etc… By January 5th, I’ve read the whole book and thought “what if I think July 12th is a good idea but March 2nd is crap.”

So, I’m blessed to know my own personality.  I’m blessed to have a blog that lasted for more than a few weeks.  I’m blessed to have access to medical care and I’m blessed to be able to bitch about it when I get mad and then am able to find DIFFERENT medical care if I need to.

Today I have a lot of sewing to do, so I’m thinking it’s going to be a watch TV on that computer monitor while watching the internet on this monitor and leaning back with my sewing stuff.  I have a ton of pictures to download and edit but I can do that later.  Today, I need to accomplish something.  Trying doesn’t make my brain happy – accomplishment does.


12 07 2009

I’ve never been big on experimenting with myself or my projects and it’s very interesting for me to have to do it now.  I’ve always been the personality type who thinks through every path, every outcome before deciding on a course of action.  I had one supervisor say “you’re the only one who can tell a train is coming down the tracks before anyone else can see it.”  I get nice Cherokee imagery from that, maybe a DNA memory or trait.

Now I’m experimenting on not only my body but also on my artwork.  It’s very odd and makes me nervous.  With my body, I know that I’m probably more educated in mitral valve prolapse than many of the doctors I’ve visited and I also know how my body reacts to medication.  I hate not having the security of not knowing how it’s going to turn out.

The palpitations have been very bad this past week and they just will not stop.  At least the dysautonomia didn’t kick in badly until around lunchtime on Friday.  I think it’s the heat – July and August always take the steam out of me.  It’s also worse if I’m in pain, stressed, or sick and I got a touch of that stomach bug that went around.  Time for a reboot.

Here’s what I’m trying today:  0.5 xanax with lunch to try and break the cycle of palpitations, 1 dose of CoQ10 to lube up the connective tissues, my B-complex supplement, and potassium to regulate the heart rhythm.  Low potassium is what landed me in the hospital last time with atrial fibrillation.  In 3 hours, I’ll take 2 doses of magnesium – which is a muscle relaxer but also blocks the absorption of other meds – and some calcium and zinc to try and get my blood levels back up.  At bedtime, the magnesium should be out of the way to take my normal nighttime meds.  From now until bedtime, I’m going to push fluids to try and get my blood pressure to level out.

From the different ways I’ve looked at it, this will probably break the cycle of the regurgitation.  After the heartbeat gets back to normal, my pulse should drop, my BP and body temp should go back up, and the crazy nerve stuff should disappear.  When the prolapse gets real bad, I get numbness in my hands and lips, I overheat, and I get dizzy as hell.  Anyone who is around me a lot notices that I have like 30 tubes of Carmex mint.  That’s because I rub my lips together to get feeling back in them and after all these years, I don’t even think about it.  Lips need lube too.

With my art, I’m starting to get out of the gorilla glue phase and I’m wanting to draw and paint more again.  It’s just the style that I had before isn’t really fitting the way I feel now.  I did some minimalist pieces for our living room that get a lot of praise, but I don’t know if I want to keep going in that vein either.  The best thing to do would be to just start drawing and see what happens.  Psychologically, I know that’s what breaks creative blocks – just letting go – but I look at how perfect the new charcoal pencils are in their package and how pristine the paper is and I just don’t want to ruin it with my… crap.

I even know that what I end up with is not crap.  Every portrait I’ve done is still hanging, every painting I’ve done has sold or been donated to family, every tattoo I’ve designed has been inked, and still I feel like it’s immature middle-class drivel.  I’m not looking to make a statement or any of that post-modern self-ironic crap that’s popular these days, it’s just that I’m having trouble finding a subject that makes me happy.  I may spend a few days photographing the doves and start drawing from there.  I have a common thread of avian-love in my paintings.  Most of them are tropical and bright though and the doves are soft and neutral toned except for that bright orange ring around their eyes.

The only wrong thing would be to do nothing, right?  If we do nothing, we don’t have the opportunity to change anything.


3 07 2009

It’s hard to believe today isn’t Saturday.  It just feels like the weekend but tomorrow will probably be spent chilling out in the house or in our yard.  We could go to Chateau Elan or out to the Lake Lanier but that would take getting there at about 9 am to get a decent spot and dealing with the sticky heat, no good place to potty, then not getting home until 2 am because traffic gets murdered on both 85 and 9-85 and every single road that is in between the two. Next year, we may have to save up some money to get a suite inside the Chateau hotel and just chill out there all day.  On the other hand, we could stay at the resort at Lake Lanier Islands, but folks get a little crazy out near the lake.  Apparently beer and boats and too much sunshine make regular people turn into idiots.

I need to go get a bath and do the grocery shopping today.  I don’t feel too bad this morning, even though I didn’t sleep a lot last night.  Alyssa slept in the bed with me because we’re trying out this co-sleeping to form relationships thing.  It’s like a way to get used to each other in a very no stress fashion.  We hadn’t been able to try it until they were adopted and I’m hoping it helps to repair this mutual animosity between the two of us.  Watching her last night, I realized how much like me she is even in sleep.  It’s hard seeing her as a little person who is not just “me at that age.”  I see so much of myself in her that I forget she’s her own person with her own personality.

I’m realizing how hard it was and is on my dad to have two daughters who are so much like him and a son who is so much like his mom.  He makes that comment a lot.  “It’s strange that my daughters ended up like me and Bob takes after Kim.”  He watches us in that detached sort of analytical way that I catch myself using on Alyssa.

I need to spend some time thinking on what I want for her and if that really has any effect on what she actually wants for herself.  I want her to have the best education she can get to keep her crazy intelligence busy.  I can provide that with the charter school nearby until she’s in middle school – after that, she’s going to have to use her own ambition to select the classes that will either challenge her or will just get her through.

I want her to grow into a woman who is practical with the real world, without being so hardened to it the way I was.  With my generation, it’s hard to be an idealist when so much has happened to us as a culture.  Much of our idealism had to come from denial of the world as it exists.  I also don’t want her to be like the sheltered kids I knew in school and in church who never really understood the other side of the cultural equation.

I want her to be healthy and fit in body and mind.  Here’s where I struggle.  She’s definitely got the “fat gene” and I keep visualizing the only pic I have of her bio-mom… and it’s not pretty.  It’s not even close to “fluffy” or “sturdy.”  Right now, I’d say A is sturdy with some baby chunks.  Her legs are crazy muscular but she carries her softness in the middle.  The doctors have already scared the crap out of me about that:  childhood diabetes, high blood pressure, heart problems.

She’s a big girl and it’s easy to see that when she’s around her classmates.  She’s taller, bigger boned, thicker.  She’s also more athletic and her hair and fingernails are much healthier.  I look at the other little fine-haired wormy looking kids and I have to admit I have that parental bias towards her.  I also look at the pictures we have from when she first moved in and she’s a lot healthier now that she’s on the “athlete diet” my mom always had us on.  It just works a lot better on her and E than it does me.

I keep picturing this girl I went to school with who was always so fat and her mom would send her to school with a plain salad with ranch dressing.  It was like singling her out as “the kid on the diet.”  I want Alyssa to know enough about nutrition and how to limit herself before she goes to school and gets exposed to all that crap.  Food takes up so much of our time that it’s ridiculous.  If she’s out of my sight, she’s begging people for extras.  At one point, she had a pre-K teacher feeding her 3 lunches a day!

I remember my mom yelling at my aunt to not feed us crap on the sly.  My aunt would yell back that kids needed sugar and fat in order to be kids.  Now that I’m grown – and I’m serious – weight is still talked about all the flipping time and the grown ups around me are flat out nuts.  My mom is 5′ 8″ and 135 lbs.  She hates being over 130.  She stands naked in the mirror and glares at her hips.  I know she’s not as slender as she was in high school or in the Navy!  She’s almost 50!  In school and in the Navy, she was a champion swimmer and would spend hours a day in the pool.  If she wasn’t in the pool, she was running track.  No one can keep up that kind of training regimen and actually have a real life.  Still, if you walk by and pat her on the butt, you’re liable to break your hand.  She’s got the hardest, most muscled body I’ve ever seen on a woman her age.

My sister is exactly the same way: former athlete who now bitches about being 125. My aunt: same way.  She was a swimmer and in the Army, but she at least doesn’t bitch until she hits 160.

And you know what, I’m the same way too.  I’m much shorter than them and I’m built for comfort instead of speed (my mom says I’m “dainty”) but still when I hit 130, my heart goes nuts with nervousness.  I was 129 at the doctor on Friday, but my mom informed me that since I still had a uterus that it was ok for this week to be about 5 lbs off.

I know after all these years of conditioning to eat a certain way and if the scale gets too high, to stress the fuck out, that I really have one mindset that bothers me:  I don’t respect fat people.  Why should they be allowed to not work as hard as I have?  If I ate what they did, I’d be fat like them but I’m not.  It’s not that hard, you just can’t eat that trash with all those toxins and fats. Try a glass of whole milk if you need some fat – at least it’s not processed into grease and you’ll get some of those complex dairy proteins.  And yeah – let’s talk about the protein that you’re not going to find in a chicken nugget.  Not that hard, people.  How about some fruit? Pay attention to what you put in your pie hole.  Seriously, now.

But is that better for me than actually being overweight?  Does it really make a difference?  When it comes down to it, I’m not on insulin but I am on 3 or 4 other prescription drugs.  That little thought in my head that says “at least I didn’t do it to myself” really bugs me because really – I do feel like it’s a trade off.  I could probably chill on the meds if I had this MVP diet down pat with no caffeine, plenty of water, and 60% organics or if I regularly took the omega-complex supplements, the CoQ10, the extra B, D, and E vitamins, and the extra magnesium and zinc like I’m supposed to.  I really don’t take care of myself “like I’m supposed to.”

In all honesty, I could easily be a vegetarian.  I just don’t like meat that much but my body gets to craving it because I have to have those extra meat proteins to keep the connective tissues that work the heart valves healthy.  I’d love to eat summer veggies and jasmine rice, pasta, and couscous with fruit all the time but if I do, I end up in the hospital with doctors staring at me like I’m stupid because my heart went nuts and I passed out in public.

So we’ve established that I’m nuts in regards to myself.  Is it any surprise I’m hard on Alyssa?  Is she going to absorb it from the extended family anyways?  If I do let up on her, will she hate herself for the way she looks?  Can she actually overcome the cravings without becoming anal-retentive?

So I need to go grocery shopping.  Yay.

I love pharmaceuticals! /sarcasm

19 06 2009

This headache today has turned into a migraine.  I thought this morning “I hope this isn’t going to be a migraine.”  It seems like my earliest warning sign is grumpiness.  If I wake up grumpy as hell, I’ll have a migraine by noon or so.  Sometimes.

Sometimes, I’m just grumpy.  The problem is that in order for migraine abortives to work at their best, they need to be taken as soon as the first symptom sets in.  How do you do that with “grumpy”?  By the time the next symptom sets in – jaw pain and pain in the back of my head – I have about 10 minutes before I lose vision in my left eye and about 20 before the mind-numbing pain sets in.

So, the thing that would make the most sense would be to use the meds when I wake up abnormally grumpy, right?  Sun is shining, birds are singing, kids are happy and sweet and I’m still grumpy – take the meds.  The problem is that Zomig nasal spray costs about $10 per dose WITH insurance and they give me the hiccups.  I also get the other side effects like freezing cold (not too bad when it’s 95 degrees outside), tingling, nausea, irritability, etc… that normally come with triptans.

My choice now is deal with the migraine the old fashioned way and just sleep until tomorrow or… have the hiccups for the next 48 hours.  I wonder if my doctor ever wonders why I ask for refills on darvocet and meloxicam twice as often as I do for Zomig.  Half the price and half the side effects beat out being able to drive or think for the next 8 hours.

So, here’s my list, so far of meds that I’m in the “rare” category on and also the list of why no one will ever want me on their drug trial:

Codeine:  uncontrollable vomitting

Topamax:  I stopped sweating

Maxalt: made with aspartame and aspartame makes me tingle all over so badly I hate to wear clothes or be touched

Imitrex: doesn’t work at all – not even injections

beta blockers: make me pass out at random intervals

calcium-channel blockers: give me a rash

… there are more, but those are the ones doctors are most interested in and are hard for me to remember.  Last time I was swept away to the hospital because my heart went ape-shit again the ER doc said “but there is a cure for MVP – beta blockers like propanolol.”  I gasped out “I’ve tried atenolol and propanolol and both made me lose consciousness randomly.”  He looked at me like “well, shit.”  Then ativan for the panic attack the chest pain gave me, potassium for the atrial fibrillation… some Tao philosophy about the chicken and the egg that had something to do with panicking only making it worse and I was sent on my way.

I guess it’s good I can’t reproduce.  I have mitral valve prolapse – everyone on my mom’s side of the family, my siblings, and all their kids do too – that regularly acts up with any sort of stress or chemical.  My dad has neurocardiogenic syncope (sometimes his brain forgets to tell his heart to beat) and got a pacemaker at 38.  Add in the tendency for brain cysts, ovarian cysts, skin problems, terrible eyesight, OCD, allergies to any sort of insecticide, and then the laundry list of problems that come from being fat (on my dad’s side) and I don’t know why anyone would want my genetic jackpot.

Oh yeah.  I’m gorgeous, have a great IQ, and women in my family tend to live until their late 90s and have super-fast metabolisms. Even my great-grandma who is in her 90s and is fairly senile looks like she’s 60.  I think I should sign up for one of those genetic database groups that compare y0ur DNA to your health history and see if it really is just sucks to be me or if I have some sort of evolutionary trade-off going on.

I need Dr. House to tell me that it’s all about whether you choose to be pretty or healthy, but I don’t think I really get a choice.  I know I’ll have plenty of time to tell myself it could be worse – a lot worse – while I keep myself occupied with not going to the hospital once a week.

It’s a wonder ER nurses don’t hunt me down and beat me.