Thursday, October 31, 2013

Happy Halloween and all that good shit...

It's that time of year again.  All hallow's eve and I haven't written a post in way too long.  I've been having some personal issues.  Yes, again.  I know, I have them a lot.  I can't even begin to describe how hard the last few weeks has been at home.  Financial shit backing up again, the hubs and I constantly fighting, the kids running amuck.  It's just been about as crazy as I'd ever hope it to be, except I don't hope for it.  I want it to calm the hell down.  I'm having issues with my mom still too.  I love her, she's my mom, so of course I do, but HOLY JEEZ she's driving me up a wall.  My cat that I'd had since before Mac was born died in part because she was lactose intolerant and my mother REFUSED to stop giving her milk.  She basically crapped her guts out until she just died.  There was no point in taking her to the vet either, because we knew what it was and my mom still refused to believe it.  She'd stop with the milk for a few weeks, the cat would get all better, stop crapping blood, and then sure enough she'd give her a big bowl of milk and it'd start all over again.

So she died, and it broke my heart a little more, and that was just a few days after my mother accused me of overtaking my meds because I had a migraine and was throwing up one day.  I have chronic migraines, that's why I take migraine medicine prescribed by a doctor...duh!  That and I'm not the one running out of meds every month, she is.  We also discovered she's not been taking her thyroid medicine.  Considering she doesn't have a working thyroid, if she doesn't take it, she'll die.  She had a bottle that was filled in JULY that was still more than half full.  Thing is, if my darling husband was doing his job, he'd have known that.  But he's not.  He's too busy making my life miserable to do that lately.  Everything I say he gets defensive over, and I have no idea why.  I'm sick, I can't help it.  I didn't wake up one day and decide to have heart failure or Brugada or Fibromyalgia, or the migraines, or RA, or the other crap, or the incredible weight loss that has turned me into a skeleton.  I didn't pick any of this, and what happened to in sickness and in health?  I suppose I could have warned you that this was one of THOSE posts huh?  Well, I need to vent and here is the only place I've got.

I'm so lonely for positive adult interaction it's pathetic.  I don't have very many positive people in my life and the ones I do I feel like all I ever do is complain because I just have so much to complain about.  I know the saying if you can't be happy with what you have, you'll never be happy with what you're going to get.  I even understand it, but it's really hard to remember sometimes.  Especially when I'm constantly being reminded of what I don't have.  Like food.  That goes in to my why I am so frustrated with my mother category.  She is like an eating machine.  She eats everything that is not nailed down and thinks that her colostomy bag gives her the right to do so. While I've lost over a hundred pounds since we moved in here, she's steadily gained weight.  All while making these little comments about how I must be so much taller than her because she "weighs the same amount" and can't fit in to the same size as me.  I guess she doesn't realize that my husband goes to the doctor with her and I know she outweighs me by like 40 pounds (and is at least 4 inches shorter).  It's that crazy here.  If she sees something to eat and she thinks I might want it, she eats it.  I actually have to hide food in my bedroom to be able to have anything at all that isn't made at dinner time.  Even then, we have to shop day to day so she doesn't eat half the ingredients before dinner.  Worst part?  We pay for all the food.  So I'm paying out like $1000 plus a month in food and even my kids food isn't safe.  We catch her feeding the boys milk to the cats, cheese to them, anything they will eat.

Years ago, they thought she had a stroke.  The truth is, I can't find anywhere in her medical records that says she did, but it's easier to say that to people that to say "she takes enough ativan to kill a horse and forgets what the fuck she ate five minutes ago".  My husband took away her pills for a day.  She called her doctor and told him that my husband wasn't giving her any meds, so he chickened out and gave them right back to her.  No one monitors them, and she takes so much to get high it's insane.  It'd knock out a bull elephant.

Moving on.  Samhain is usually a time of happiness for me and I just couldn't get into it this year, I just got too caught up in my whateverness to be able to get super involved in it.  The kids didn't really dress in costume so much as painted their faces, and in truth, masks and face paint were traditionally the way people dressed up for Samhain in the good old days.  As I write this, the boys are still out trick or treating.  I'm watching Carrie with my daughter and fighting off a headache for the 5th day in a row.  They've been bad with all the stress and my bad moods.  And the weather is changing, so my bones hurt oh so bad.  It's just been one of those years...again.  My good old ticker isn't working very well either and I found mold in my oxygen concentrator so I can't use it and I'm stuck with my portables until I get a new machine :( and they are all almost empty, so I'm not sure what I'm going to do.

So this has been one big blog o bitchfest and I apologize for that, but I really needed to get it out in a bad way.  And that is what this blog is for sometimes, so this is what I do.  I write to get it out, because I can't keep it bottled up anymore!  On that note, I'm going to go watch this movie, and wait until the boys bring me back candy to steal ;)

Until next time...
J

Tuesday, October 15, 2013

In Loving Memory...

I wrote a post the other day explaining why I have such a hard time in October.  If you read it, and read down to the comments, it explains a lot of why my behavior has been so strange as of late.  I'm also just plain not feeling well.  Something is up with my heart again and the shortness of breath is beyond dealable for the moment and it was suggested by my cardiologist that I use my oxygen machine whenever I get short of breath or have any kind of dizziness that doesn't immediately go away after sitting down.  Here's the thing, I take meds that make me dizzy all the time, so sometimes I put it off.  Yesterday, I realized both my portable tanks are empty and I'm out of clean 50 foot tubing and cannulas so I have a whole new bullshit deal I have to handle for the week.  Yesterday, I had a bout of hiccups (I know, seems really lame and benign, right?) but if you have a cardiac history like mine, you know hiccups that just won't go away are a bad thing.  Especially when you have a pacemaker lead laying right next to your vagus nerve.  So I spent most of my day laying in bed hiccuping with my oxygen on.  I also had a fight with my mother the other day about her belief that I use my heart complications as an excuse not to do things and how my depression is strictly caused by overtaking my pain meds.  Really, that's not what this post is about, but I had a few things to get off my chest today so to speak.

The title, let's talk about that.  I posted about losing babies.  I wanted to post a little deeper about My son Mac.  MacKenzie was a very wanted baby.  We had planned for him, and he was to be the only one of my children without the MLM initials because his middle name was Zane after my late brother.  His name would have been the same no matter his gender, but he was indeed a boy.  The day my water broke, I felt "off".  I blame so much of this on myself because at 19 weeks I still did not have a regular OB/Gyn.  The previous experience had marked my soul forever and I was afraid.  I was constantly afraid that something would go wrong.  I believed with all of my being that once I'd made it past that first trimester, we were safe.  That there was no way I would lose the baby.  I never thought of fetal viability age, or amniotic infections, or any possibility that I wouldn't stay pregnant past that first trimester, once I'd passed that hurdle.

I was so wrong.  My older children and I were sitting watching television that afternoon and I had been achy/crampy and just felt plain weird.  I'd had a bit of a cold a few weeks before, but I was totally over it, and at that point I had quit smoking (I quit as soon as I knew for sure I was pregnant that time and never smoked again).  All of a sudden a felt a little pop and a gush and my brain couldn't understand what had happened.  With my two older kids, my water had never broken on it's own, in fact, my oldest was almost completely in her sac as she slid out.  It was something I'd never felt before and I was confused.  I sat a moment and asked my son to bring me a towel, and he had no idea why so he brought me a small hand towel from the kitchen.  I must have looked scared out of my mind, because when he came back with it, he asked me what it was for.  I told him I thought my water broke, and like a scene from a movie, he asked me if I wanted a new glass of water.  I told him no honey, I meant my baby water and he broke down into tears.  He knew what that meant.  He was so young, only 8, but he knew that meant something was very very wrong.  We called his dad to come home.  My daughter sat there stunned.  By the time my husband got home I'd called my mom and she got there within minutes of my husband.  We didn't know what to do.  We were all in a panic.  I was afraid that the baby would just fall out.  In retrospect, I know how dumb that sounds, but I was.  I was afraid if I stood up, my baby would just fall out of me.

My family decided that since we were so far away from the hospital, that we'd call an ambulance, and they got there pretty much right away.  The did a scoop and run and got me to the ER so fast I don't even remember that trip.  My husband had followed behind in the car and my parents stayed with the older kids.  Once there, they did a quick exam to discover my cervix was completely closed and still thick.  They didn't have any clue what was going on, and they hooked me up to a contraction monitor.  I was contracting as if in labor, but remember my belly was tiny, I was only 19 weeks.  They did the test to determine that my water had really broken and of course it had, they also did a ton of blood work and an ultrasound.  That first ultrasound, he was moving and still very much alive.  Alive and with no cushion of water at all.  I had a temperature of 103.  They debated on what to do.  At one point, they even said to send me HOME!  I thank the Goddess that is not what happened though.  After several hours in the ER I finally got moved to the Labor and Delivery floor.  They did so many ultrasounds, they kept checking to see if he was alive, and if I was regenerating water.  Evidently there are cases with pinhole leaks where the baby can be carried to viability.

They hooked me up to monitors, but kept losing his heart beat and every time they did I'd panic again.  They hooked me up to IV's, antibiotics, anti-emetics, mag sulfate, fluids.  They kept checking my cervix because they couldn't get the contractions to stop.  And they never did.  But they also never got strong enough to do anything.  They kept checking to see if the baby was alive.  They came in to counsel us about end of life procedures, about the hospitals weight limit for resuscitation and how no one was sure due to my gestation if the baby would meet them.  As it turned out, we didn't  need to worry about it, but I was of a mind to decline anyway.  I felt that those efforts would be better spent on a baby with a higher chance of survival.  But that last ultrasound showed no fetal heart tones.  My baby was gone.  And I had to finish laboring.  They gave me a drug called Methergine, because your uterus doesn't have pitocin receptors until after the 20th week and it wasn't making my contractions work.  The Methergine made me throw up about every twenty minutes for the duration of the labor.  They gave me some demerol for the contractions until they could get me an epidural.  Strangely, my only effective one.

Once we knew he was really gone, they stopped treating me like I was a mother and began to treat me like a patient.  They no longer checked my cervix for changes.  They no longer asked me if I needed anything.  They left my husband and I alone in that room to process what was happening to us and to grieve.  And finally, just after 1 am on October 1st 2004, I pushed with everything I had left in me and out slipped MacKenzie Zane Mead.  We never got a lock of his hair because he didn't have any yet.  I couldn't bring myself to hold him, but my husband did and wept until his tears ran dry.  His skin was transparent, and he was so tiny.  I remember his face, it's forever etched into my memory.  When all else is gone, his face will be there.  They let us look at him for such a brief time because I hemorrhaged and needed to be taken care of so I wouldn't die.  The placenta had attached to some scar tissue and came out in pieces and when it was finally all the way removed I continued to bleed profusely to the point that they had the transfusion ready for me, but by some miracle of the universe, the bleeding finally slowed and I was "ok".

It took them hours after to find me a room that wasn't on the maternal floor.  In those hours we listened to new lives enter the world, and happy parents and happy families while our hearts were breaking into a million pieces.  I didn't understand how I could have loved someone so much that I'd never met.  But even though I'd never met him, I'd felt him move inside me.  He had a name and a family that wanted him greatly.  He was no less my son than Morgen or Maxwell or Memphis.  They kept me in the hospital for 4 days to be sure I wouldn't start to bleed too much again, but I think part of it was to make sure I was dealing ok with it.  I wasn't, but I put on a good show.

On the way home, we went to the pharmacy to have my prescriptions filled and the lady behind the counter congratulated me on my new baby (because of where the prescriptions had come from). I told her he was dead and had to go wait in the car until they were done.  When we got to the house, I held my children, I cleaned the chair and I tried to move on.  I didn't want to do this again, I didn't want to risk this pain ever again.  I never wanted to put my kids through it, or my husband through it.  I grieve still.  Every day I remember that I have a little box with nothing more than his memory.  I touch the outfit that he wore, I look at those two polaroid pictures and I hope to some day have the money to tattoo his little footprints on me (something I had hoped to do for his birthday this year but just couldn't afford it).  I miss what could have been.

But I thank him.  I thank him for paving the way for his brothers after him.  Had I not gotten so far along with him, I probably would not have been able to carry Max or Memphis. (That's a whole other story in itself that maybe I'll explain another time.)


When I look at the two youngest, I wonder if Mac chose to come to me to give me the strength to carry his brothers.  If there was some greater purpose in his loss, or if it was just some awful twist of fate.  Either way, I remember him with love, and I remember him with each breath I take.  When I get frustrated with Phizzy at bedtime tonight, I'll take a few extra moments to settle myself and remember what a gift he is.  What gifts they all have been to me.  I love them more than life itself, and that's the way it should be.

I may not be the best mother in the world, but I'm the best mother I can be.

Until next time...
J

Thursday, October 10, 2013

Why October Is Not My Favorite Month...

I've been through a lot of strangeness in my almost forty years.  A LOT!  So much, that when I tell people my life story, they think I just have a very vivid imagination and that I'm off my meds again or something.  I basically live the real life version of a soap opera.  Every now and then, I'll have some normalcy and things will calm down and we'll have months go by without anything out of the ordinary happen.  October usually isn't one of those months.  Some of my worst things ever have happened in October.  But also, one of my best.

I'm one of those "good news first" people, so I'll tell you the good first.  When I moved back home to California from Ohio, it was the first week of October in 2001.  That was a good October.  That trip was pretty cool really.  I didn't do the bulk of the driving, my husband did, and we did it in three days.  Only two nights spent on the road and the third night we were home.  Back home to everything that was familiar.  Back to my desert, my mother, my family, and my daughter who I'd been separated from since August 23 because she'd come back with my mom to start school on time.  The separation had been hard on both of us.  9/11 happened while we were apart.  She had come back to California with a terrible case of head lice that was resistant to all but the prescription version of the shampoo because we'd been battling the little fuckers for months prior.  Every time I'd gotten rid of them on her, this one particular neighbor girl would give them right back to my daughter.  Thankfully, head lice isn't something that's very common here in the Mojave Desert.  I and she are forever grateful to her aunt Jorena for picking nits out of her hair for hours on end until she was lice free.  Finally.  And that was the good.  Now to the bad.

I've suffered some pregnancy losses.  While I'm aware that it's very common, and there are many women that have suffered through the same thing, my documented losses were not common at all.  I say it that way, because I've had an undocumented loss as well, where I had a series of positive home tests and then began bleeding and my body was able to clear the products of conception without a doctor's intervention so I saw no need to seek medical care.  My first documented loss was the year after we came back to California.  I had had an endometrial ablation in Ohio several years before so I was not concerned with birth control and we weren't using much of anything other than natural family planning (watching the calender).  I had a very regular cycle at the time and although it had been many years since I'd been pregnant, it didn't take me long to figure out I was.  I took a home test, got a positive and went to the doctor.  At about 6 weeks, I started to spot.  It was not unusual for me to spot during a pregnancy, I'd had that happen every time, but this was bright red spotting, so we went to the ER.  They did an ultrasound and found a heart beat.  They assured me that since they'd found a heartbeat, statistically, the chances were slim that I'd lose the baby, but to be safe, see my doctor the next day.  I did just that, and she refused to do an exam.  She refused to do anything but a urine test, which was still positive and told me to go home and keep my feet up and I'd be fine.  So that's what I did.  I continued to spot, but it was very light and the doctor just kept telling me I was fine.  Four weeks later, I bent over and felt a gush.  I went to the bathroom and discovered that the gush was blood.  I called my husband, and we went to the ER per doctor's orders.  The ultrasound confirmed I'd lost the baby.  The baby had died the day I'd had that first ultrasound at 6 weeks and I'd carried a dead embryo for weeks.  It's called a missed miscarriage.

The ER sent me home.  The doctor there told me my body would pass everything since I was bleeding now, but the next day, the bleeding stopped.  That was October 14th, 2002.  For the next three days we struggled with the doctors and the insurance company to allow me to have a D&C and be done now, they kept trying to tell me my body would pass the baby, but my body was not doing it's job.  Go figure right? My body, NOT doing it's job?  Like that never happens/  Finally, on the 17th, they agreed to allow me to have a D&C at the county clinic in the area.  When I got there, we had to wait another several hours while I convinced the nurses I did not need yet one more ultrasound at the ER to confirm my baby was dead.  I just wanted to be done and grieve and move on.  Eventually, a kind nurse signed off on the paperwork, and they allowed the procedure.  I went home to grieve and realized that if I could get pregnant that time, maybe my body was capable again, and maybe, if we planned it next time, the outcome would be better.  So we talked about it, and we decided that we'd try.

The next year I spent trying to get and stay healthy, I tried really hard to quit smoking, but I didn't.  I did manage to cut way back and I was down to less than a half a pack a day.  I took vitamins and supplements and we watched the calender, but didn't try very hard.  We didn't NOT try either though, and I ended up pregnant and due in May of 2005.  But on September 30, 2004, at 19 and a half weeks, my water broke because of an amniotic infection I didn't know I had.  MacKenzie Zane was born just after 1 am on October 1st, 2004.  Because of his gestation, he was considered a late term miscarriage, but I had to labor and deliver him.  It was the hardest thing I've ever done in my life.  It changed me.  It altered my being forever.  When I get really weird in October, this is probably why.  This particular loss, was devastating to me, and even though I went on to have two more healthy children after him, I have still never recovered completely.  The labor was the most painful I've ever had, I think, because I knew the whole time I wasn't going home with my baby.  I went home with a box of keepsakes.  A copy of his tiny footprints.  A bluebird pin from the chaplin.  The outfit he wore for the few precious moments we got to hold him.  And two polaroid pictures that you can barely tell what he even is because he was so premature he still had transparent skin.  I get crazy this time of year.  I lose myself in my sorrow.

I always try to figure out what I can do to fix things.  How I can fix myself.  I come up with all of these plans to do it too and then I don't follow through.  I think it's because I'm scared.  Scared of what, I'm not entirely sure, but I spend my whole life scared of one thing or another.  Outcomes.  Fear of outcomes.  I know, I'm weird.  Having told everyone those things though, it probably explains a little more about why I've been so down the last few weeks.  Also, I'm going through some "everyone hates me, everything is my fault"  head trip that I can't seem to get over.  The people that I live with are absolutely no help at all and in fact are contributing to that so much, I'm pretty sure I'd be over it by now if I didn't have a house full of people to tell me every thing is all my fault and to remind me how much they don't like me.  Also, I have no real life friends.  Like none.  Like, I have absolutely no one to call to go hang out with on a regular basis because I'm so socially awkward I have no idea how to make them.  The only local friend I've got I'm related to by marriage and she's got so much shit to deal with of her own I don't want to intrude.  I WISH I knew how to make friends and that I had at least a few of them, but I just don't.  I didn't used to be so awkward with people, but I am now and I'd like to figure out how to change it.  Anway... So I've got my one online friend that is so far away and in a different time zone and I ALWAYS feel like I'm bothering them with my weird shit and not being a good enough friend back.  I am really awkward with people, have I mentioned that?   I need a class in friend making or something, but it'd need to be taught online, because I can't handle seeing that many people in real life.

Until next time...
J


Friday, October 4, 2013

A Major Apology and Some Other Random Things...

First, I'm going to apologize the the Mesothelioma foundation and especially to Heather Von St James.  She had very graciously offered me the chance to write about National Mesothelioma Awareness day on September 26 and I dropped the ball.  Completely.  I got overwhelmed in my head and in my life and I just didn't do what I said I would do.  I'm so very sorry for that.  I'm not sure how to make up for it, but if anyone has any ideas, please leave a comment.


I drop the ball on a lot of things.  I just do.  Obviously, that's not what I set out to do, it just happens more often than I'd like it to.  I suffer right along with everyone else when I've done it too.  I guess that's the universe's way of reminding me to get my shit together.  Which I still, at almost 40, have yet to do.  I've just never been good at the follow through.  I desperately WANT to make people happy, but no matter my intent, I don't meet those goals very often it seems.

I'm depressed.  I suffer from what my doctor has termed "situational depression" with the diagnosis of OCD and Anxiety that was made so many years ago, but also, she firmly believes I'm suffering from some degree of post traumatic stress over a whole hell of a lot of things.  Basically, my head's all fucked up.  I don't WANT it to be, of course, why would I?  No one wants to feel like this, do they?  It's gotten to the point in my home life where I don't even want to be here.  I feel so unwanted in my own home it's disgusting.  No one seems to make any attempt to even try to understand that I have these feelings, let alone to want to help me with them.  All the people here are seemingly worried about is what makes them happy and what they want.  It seems to go beyond the normal every day human selfishness that all people have.  Trust me when I say that I'm aware that my perception could well be wrong.  Realistically though, I live with a bunch of overly selfish people that are very used to me doing everything for them and taking all their shit without complaining too much about it.  It's not because I WANT to feel this way that I do.  I can't imagine anyone wants to feel like no one likes them and that everything they say just makes the people around them angry.  My family is all I have.  I don't have any friends.  I can't think of more than 3 people on the whole planet that would even talk to me on the phone if I called them.  And even them, whatever is wrong in my head, tells me they probably don't really want anything to do with me either really and only talk to me because they feel obligated. Like I said, I don't want to feel this way, I just do.  I'm being medicated for it.  I take my medication like I'm supposed to.  But at some point, if the environment doesn't change, and the people around me aren't willing to help me more, I feel like nothing with ever change and I'll stagnate here until I die.

Moving on.  I went to the cardiologist this week and it was a terrible visit.  Beyond the fact that it took forever, Memphis was really difficult for the entire time.  Care1st sent me a taxi for transportation, there and back...to LA!  The total for both trips was over $400.  I'm glad I didn't have to pay for that out of pocket, but what a waste on their part.  Of course I got bad news.  I always get bad news at the doctor anymore.  I've lost so  much weight that there isn't enough skin to cover my device anymore and it's migrating out.  Meaning, my skin is so thin covering it, that literally at any given moment I could stretch the wrong way and the skin could tear exposing my pacemaker.  I have very little time to put some weight back on or they will replace the device that I've only had a little over 2 years.  They last on average 6 years, so I don't need a new device per se, just one that isn't about to pop out of my skin.  You can actually SEE where the leads feed out of the device and up to my collar bone.  It's fun times.  I was told that if I even got a cat scratch over it that I MUST go to the hospital immediately for antibiotics to avoid an infection of the pocket.  With a different doctor but while I'm making medical admissions, I'll go ahead and tell everyone that I did indeed have a pilonidal cyst.  It was confirmed that the huge bruising over the small of my back and my butt cheeks that lasted months along with the golf ball sized lump at the top of my butt crack was for sure a pilonidal.  Again, not good news.  It's better at the moment, but the next time it flairs, I'll need it surgically removed at worst and at the best, lanced and antibiotics.  Fun times.

On another subject, we had a cat swap go on in our house.  We had a bunch of cats to begin with.  Part of the joy of being a home owner with several adults is, you can have over the "legal" limit of cats if you keep them all licensed under different adults, so say I have three, my mom does the same, and six is legal.  Or at least, that's how we justify it.  Keep in mind, there were 8 when we all moved in together.  My neighbors are awful, and the one next door to the north, hates cats.  She keeps traps in her backyard and sends them to the pound or the man down the street comes and kills them for her before the pound gets here and they dispose of them.  All of our cats are indoor cats and have a screened in patio to get their fresh air, but a few of them had a habit of sneaking out when my big Bear dog would let herself out the back screen door and it would stick open.  Over the course of a few weeks, we were down by 4 cats.  So a few days after my mom's favorite cat EZ just disappears, a little boy brings 2 small black and white kittens to the door and tells my mom that if we can't take them that mean miss from next door will get them cuz the momma cat is in his backyard so would we please please save these baby cats?  My mom makes sure that's the case and so, we have two new kittens.  But we still have less than we started with, and one of the ones we lost was my little Merlin.  I really loved that little cat and I'll miss him very much.  But if you see new kittens in my newsfeed, or here or whatever, please try not to judge me, I don't make all the decisions here, some are made for me and I just  make the best of what I have to work with.

That's really just it, I make the best of what I have to work with, and maybe I'm not doing it the way I'm supposed to.  Maybe I'm not doing anything the way I'm supposed to, but I don't have an instruction book to tell me how to handle what's in my head or what goes on around me.  I guess, beyond anything else I'm just so damn lonely for some adult interaction that doesn't include someone judging me, or being upset with me over silly shit, or feeling like I'm just not good enough for anyone to want to be friends with any more. I really feel like this even with the people at home!  I guess I have some serious self esteem issues.  I just feel broken.

Until next time (and hopefully I'll feel happier!)....
J