Thursday, April 17, 2014

That's some catch...

Have the super, best day ever!

I've learned something disturbing.  Now that I am aimlessly floating in the sea of "normal" healthcare, I understand that actually getting cared for is kind of a joke.  For example: Say, you're sobbing into your hands while sitting on the edge of the examination table, crying, "I can't live like this.  I don't know what to do..." The response will be:  "I can order some more tests.  Alrighty, make an appointment at the front desk as you leave, for four weeks from now.  Have a great day."  And, as you wipe your eyes and nose on the sleeve on your shirt, before pulling on your jacket to cover your wet sleeve, you tell the receptionist that you need an appointment in four weeks.  She clickity-clacks on the computer and says, "I don't have anything in four weeks, but I do have an opening on May blah, blah, blah."  That will be about six weeks from today, you figure in your head.  That's fun.  Super!  "Okay... um, okay."
She'll smile and say, "Alright, you're all scheduled, have a nice day!"

Now, I'm not sure about you're reaction, but in real life mine was to sort of throw up in my mouth, and think:  Shut up!  I will not have a nice day.   I don't like you.  (Or "F.U.C.K. YOU"... except I don't really swear a lot in real life).  I didn't smile.

See, my family's physician, (and when I say family, I mean entire extended family), retired this past summer.  He is a genius.  He knew our family health history like it was his job... It was his job.  (I am almost positive that is why he retired).  "Dr. Wally" took care of us.  He took care of me.  If I didn't feel well, I could make an appointment with him within the week, and if it were an emergency, that day.  He would stay late to see any of us.  We could email him if we had a question and he would respond.

Here's a thing.
I don't have a doctor now.  I'll surmise that there is a deficit of actual physicians in this area.  Most people
have a regular Physician's Assistant now, not a doctor.  There is no doctor to step on in when the old assistant doesn't know what the Hell he or she is doing.

My P.A. ordered a complete blood panel along with a full physical at my first appointment.  I received a letter stating my blood tests were great, with the exception of one thing: I have "small red blood cells," which can point to anemia, but requires further tests, if I have any questions I can call the office and..." I saw her again a month later.  She would order more blood tests.  When I told her that my thyroid had to be messing with my body, that it made sense that it was my thyroid, she told me I didn't have access to the information doctors had.  Some people don't like it when you figure stuff out yourself, I guess.  I said, "Actually I do.  I can access almost all the relevant medical studies and journal which are referenced in the public health publications." She said she would order tests to check my Thyroid functionality.

My Ferritin and Hematocrit levels were very low.  (Well, very low for a healthy adult woman; under the "normal range" on the lab scale which encompasses all of humanity.  Those are blood problems).  My Free T4 is at the very lowest end of normal.  The rest of the tests hadn't come back yet.  Now, I would not even know the results of these tests if I didn't happen to see Dr. A. the very day after I got my blood drawn, and if I hadn't told the lab tech to send him the results as well as my fun P.A. lady.  I don't see her until mid-May, so she probably won't send the letter telling me I'm going to die until early May, I would say.  Dr. A doesn't do the whole blood and thyroid thing.  He did want me to see an endocrinologist.  He did call a very big practice in a very big hospital.  They said they could see me in June if he sent along my entire medical history and all his notes, and all my blood tests, and a small biopsy sample of my liver...

No...  They didn't need a sample of my liver.

I was sobbing all over my shirt because I can barely hold my head up most days, I'm very depressed some days, and and I'm living in a foggy-headed malaise every day.  I guess that's pretty A-Okay in the current, "normal" health care system.  You have to feel really, really sick to get an appointment with a doctor.  If your sickness isn't an "emergency," you may eventually see a medical professional, but not get help until she orders some tests.  Get some tests, but you need to see a specialist.  You can see a specialist...  in June.

I mean, this super old man, with crooked knees and a crooked back, wearing a VFW hat, and leaning heavily on a cane, whom I did smile at sincerely as I left the health care center, got his toe cut off and sewed back on.  That's not A-Okay.  Is it?

He told me about his toe as I drove him home in the rain.  See, his foot was hurting something awful and he didn't think he could walk all that way.  He didn't ask me for a ride.  I just happened to smile at him, and he happened to tell me that as was reaching for my hood, ready to run through the April showers and icy puddles to my car.
Are you waiting for a ride? 
 I'm getting up the nerve to start walking.  
I can drive you home.  
Could you truly, young lady?  Thank you.  I would appreciate that quite a bit. 

Tuesday, April 8, 2014

Climbing out: The cold never bothered me anyway.

It has been three years since I remember feeling this way for not just half of the time.
What I mean is, even when I felt like myself, I always knew that this freaky thing was going to crawl inside of me and make me feel bad. Bad is an understatement, if you have read past blog posts. I felt so awful, it was scary, sometimes.

I didn't know what was real, what wasn't; I didn't know how to feel better; I didn't know how to get out of the well; It wasn't possible, I don't think; not then.

 I had friends who made me laugh, and made me forget how bleak things seemed... at least for a little while. But somehow things got worse, some kinds of friends disappear, in the end--No more laughing or forgetting--and then I was only more aware of the darkness and walls. That was my fault. I should never have needed anyone else to make me feel "happy." When you need someone too much, it becomes too much.

Too much of anything is never good...  Right?  (Well... I don't think you can get too much fresh air. There can never be too much justice.  Too much love and kindness isn't really something anyone would say. Too much Veronica Mars?  Nah, not possible.  Oh, and I would take too much lovely flawless skin, and too much respect.  [And yes those two things can be used in the same sentence as if they have equal importance.  Yeah, I know, we have to know darkness to appreciate the light and all that.  And there's the thing about being human and humans have pores and wrinkles and...  yeah...]).

Here it is:  I feel happy.  Even when my hormones are betraying me with ridiculously unpleasant brain chaos, I'm here.  I'm not gone.  I feel me punching the darkness in the face, saying, "Go away, I'm happy.  I'm happy and you are making me feel like shit.  Leave me alone."  I used to check out, sit at the bottom of the well, and wait for it to go away.  I really couldn't do anything else.  I mean it.  I was so far down there, I couldn't reach any light.  It was too sad to look up anyway.  Who wants to know how deeply alone they are in their own depression?  Not this girl; I just wanted to close my eyes real tight, and hum loudly so I could't hear the silence.

And, it was funny when people said to "think positively, and you'll feel super great."  You can't think anything when your brain is the thing that's all messed up.  For about 12-14 days every month, I was sad.  I was sad, and there was nothing anyone could do about it... especially me.

Well, that's not entirely true.  I took 2 mg of Prozac during my luteal phase and calcium, magnesium, and B6 every day.  I exercised.  I tried to avoid alcohol and caffeine... I talked to my doctor fairly regularly...  and I learned everything I possibly could about my symptoms and PMDD.  Those are things I did.  I was still sad.

She saved my life...
Then this amazing thing happened.  The iron curtain of depression lifted like the Brezhnev Doctrine was a post-it note.  I watched "Frozen."  Elsa sang, "Let it go."  I let it go.  I just let it all go, and decided I was going to be free!

...  No, that's not what happened.  Wouldn't it be awesome if a Disney movie soundtrack was the cure for PMDD and depression?  It would be ridiculous and awesome.  Damn, it would be glorious-fireworks-booming-light-shining-from-heaven-fucking-amazing if I could just march up a mountain and stomp my foot and all tragedy, mistakes, and sadness--(everything that some majorly messed up parents who shamed, isolated, and alienated their little girl for being different, for that matter)--and hormone imbalances, and brain chemical deficiencies became beautiful, crystal, triumph!  Yes!  No.  It's not so easy.  Frozen is a good movie though.  Kristen Bell is a surprisingly lovely singer.

I don't really know what happened.  All on my own, after weeks worth of research and reading, and talking to doctors (including Dr. Daniel J Heller from PMS, things started to make a little bit more sense.  See, me and PMDD out of the blue made no sense, and it's a pretty hopeless diagnosis.  No matter what "helps relieve symptoms" I was certainly batshit crazy feeling at least a few days every month.  I felt bugs crawling all over my body.  I saw the tendons ripping through the skin of my hands.  I saw a withered old woman when I looked in the mirror.  I wondered if I loved my husband.  Those are crazy things.  All of them.

What did make sense, as I pieced everything together, from every medical study I could access, and every article, and medical journal, and...  From all that I learned, I realized that what did make sense was I have Thyroid Disease.  I knew that.  I knew that for a long time.  But I didn't put it all together.  I didn't make sense of it.  I waited, with the doctors who didn't know much, for antibodies to show up in blood tests, to tell me that every symptom, and my entire family medical history, pointed to exactly what my Nanny Tops told me was making me feel so terrible.  It's the "Barry Curse."  Every woman in my entire extended family has Thyroid disease.  I would never escape it.  I stopped waiting for a stupid, unreliable blood test to tell me what the Hell was wrong with me.  I stomped my foot and screamed, "Help me!"  No more writing a blog to no one about  how I felt sad.  I wanted to know why and how and what to do about it.  Fuck the tyranny of the test.  (I'm pretty sure Elsa would have incorporated a big "Fuck you" to everyone in fictional Norway as she made fancy ice stuff and sang her song, if Disney wasn't holding her back...)

1) “Even when Thyroid Disease is suspected, it is frequently undiagnosed”
2) “When Thyroid Disease is diagnosed, it often goes untreated”
3) “When Thyroid Disease is treated, it is seldom treated optimally”

Even though I won't ever deny that I'm a little crazy, I'm very logical and intellectual in my thought process.  I want to learn everything possible.  I am thirsty for understanding.  I need things to make sense.  I want to know why.  I need to know why.  Hope comes when things make sense.  I understand when I teach myself.

I'm not all better, but I'm not all worse either.  I feel like crap, right now, to be honest with you.  Yet, I know I am happy, even when I feel like happiness is impossible.  In my darkest places this month, I could see light above me; I could hear laughter and knew what the warmth of that sunlight felt like on my face.  I wasn't hugging my legs with my face buried in my knees.  I was standing, no jumping, with my hands raised up.  I was calling, "Wait for me, I'm coming back."

And Sam was there.  And my babies were there.   Even my daddy and sister were there.  And I knew I didn't need anyone or anything else.

Saturday, April 5, 2014

Guess I'll go eat worms.

Nobody likes me, everybody hates me,
Guess I'll go eat worms,
Long, thin, slimy ones; Short, fat, juicy ones,
Itsy, bitsy, fuzzy wuzzy worms.

Down goes the first one, down goes the second one,
Oh how they wiggle and sway.
Nobody knows how I survive
On worms three times a day.

People don't like me.

Okay, I feel like people don't like me.  

I realized I am surrounded by people who don't like me; where I work and where I live.  There are people who just don't like me.  I don't mean everyone hates me, because that's not true.  I don't think I've had a student that didn't like me.  I think I can be a friendly person.  I'm not walking around with a scowl on my face, every day like my blog inspiration, Ice Cube. I know the people I admire the
most, like me...  Most of the time.

But doesn't it seem like the people who are the biggest douche bags, the ones who really make a point of NOT liking you, can make you feel like nobody likes you at all?  They make you feel like a nobody.

I know that partly, I'm doing this to myself.  I focus on the people who don't count.  I am usually very good at not worrying about other people's opinions of me, but it seems like lately, the "We Hate Joanna" fanclub has made a concerted effort to affect my life in a negative way.  That's not in my head, unfortunately. My life is a mess.

So, lately, I have been evaluating my own role in all of this.  What did I do wrong?  What do I do wrong?

In many cases, I did nothing at all.  I mean that in a good way, and a bad way.  I did nothing to these people, that would give them a good reason to really, really not like me; but I also don't do anything to nurture or even start real friendships.  Do you know what I mean?  I have spent a whole lot of time, since college, putting in no effort to have friends.  I don't have friends. I spent most of my time, from the age of 13-22 with my sister Mikhaila, who is 10 years younger than me. If I wasn't with her, I was with a boyfriend, whoever that was at the time. Family came first, boys second, and what friends I did have didn't even earn a bronze medal. I put them far away from me, and I didn't do anything to keep them happy. Mikhaila meant the world to me. Somehow, even though we were at two different points in our lives, two very different maturity levels, she was always my best friend. Family, now including my husband, are my friends.  I don't want anyone else.  I didn't think I needed anyone else.

In college I had very good friends. They were the kind of friends I should have stayed in contact with, but until I entered the world of Facebook, we never talked at all.  My best childhood friend and I reconnected on Facebook, too.  She was the kind of friend who made my life very difficult sometimes.  People who know you best have the potential to hurt you the most.  The more you tell your friends, the better they know how to make you feel terrible.  She was like that.  Most of my "friends" were like that.  Guy friends, were sometimes the best to hang around with.  There is less drama with guy friends.  There is no secret jealousies, or gossiping with guy friends.  But, in my experience, guy friends also want to get with their "girl friends."  I didn't have a guy friend who didn't try to kiss me, grope me, or hook up with me, every single time they were drunk...  Or sober.

It wasn't until recently, that I realized how lonely I am.  During the times I have not been working, (in the summer, or during medical leaves of absence), I am alone and isolated most of the time.  I spend 35 hours a week, most weeks, only in contact with my 5 year old twins.  When my husband gets home from work, we spend at least 3 more hours per day with the twins, never alone.  And then we push it, and stay up too late, because it feels like we have had no time to ourselves, but we often watch TV or a movie for at least 2 of the 3 more hours we are awake. Then 7-9 hours of sleep, per night.  

I spend 105 hours a week, when I'm not teaching, isolated from human contact outside of my children.  I call my mom, hoping she will answer some days, when I can't stand how lonely I feel, but most of the time the phone rings and goes to voicemail.  If she does answer, I realize I sometimes am grasping at things to talk about that won't stress her out.  She has enough stress.  She doesn't get out of bed most days.  I can't tell her my problems, because that would just bring her down even more.

My dad and I like to talk, but he works day in and day out.  He is always working.  He doesn't have time to talk, especially when I have nothing much to say.
Jesus' Birthday Cake.  Christmas Eve at Nanny and Grampy's House.

I'm always aware my mom is depressed and my dad is busy.  That's the reality of my family.  I can't tell them, "I just want someone to come visit me.  I want someone to want to visit me."  I want someone to want to see my kids enough, that they can't stay away.  My grandmother is still like that.  She would see us every day if she could.  I'm the loser that doesn't get out of the house and down there to visit her.  It becomes disease-like, being alone.  I'm so used to it, I forget that I have some other options.  And it seems like I couldn't possibly make new friends, like the parents of M and S's friends. But God forbid they don't like me, or I'm too depressed to carry on interesting conversation that would make them want to be around me.

I put all my friend efforts into family, because that was what mattered most to me.  And that kind of backfired.  At this point in my life, the only person I can talk to, that I can fully let myself trust, is my husband.  I'm happy that my husband and I are in agreement that we think we are the best people ever and the best company to keep, but I'm also angry that I don't have my family, at this stage in my life, as confidants.

Grampy and Stella on Easter in 2009.

Neither of us have families, like I always imagined families should be.  Sam's family doesn't exist in our lives, for many good reasons.  I was spoiled, growing up in a super close extended family, with my grandparents at the heart of it...  Literally -- All of my cousins lived within walking distance of my grandparents' house.  That means my mother, and her two brothers and two sisters were all close, and all of the grandkids, 11 of us, who were close in age, were also great friends.  We were like siblings.  My mom tells me that was not normal.  Families aren't like that, usually.  And I say, "But that's what I want.  I want that!"  It's not fair.  It's not fair! 

 I feel so cheated that Mikhaila is gone. She left me the year the twins were born. 5 years without my best friend, and the worst part is she's holed up in a bedroom, in my parents' house, less than a mile from me. I feel cheated that Mikhaila is not in my life. It's not fair that I won't be her maid of honor, and I won't be an aunt to kids who could feel like my own.  I feel cheated that my brother went off and got married in Indiana without telling us, and that somehow he and his little family don't feel connected to us, really.  I feel cheated that my sister, Marguerite, who is a wonderful aunt to M and S, will never have children.  She and I will never, completely be friends, because she and I were never friends as children, if that makes sense.  She will always be close to Brent, (our biological father), which is creepy.  There's a reason my mom divorced him.
Easter Twins, at our favorite place in the world.

Gees. No wonder no one likes me! I'm so negative. I complain too much. Everything is about me.

My children will have one or two cousins, from my brother and his wife.  And they will see their cousins sometimes.  But it won't ever be what I wanted, and what they deserve.  Christmas Eve, will not be like I remember, as a child.  We would all sit in church together, buzzing with the excitement about Santa, when we knew we should be thinking about baby Jesus.  On that magical night, M and S will not be running around their grandparents' house, with 9 other kids, playing and eating and laughing and blowing out Jesus' birthday candles.  And they won't have big Thanksgiving dinners, and have to sit at the "kid table."  And they won't have epic Easter Egg hunts, with tons of cousins scrambling over each other.  And they won't ever know, what I know about family.  They won't ever know what it could have been like.  And so they won't miss it.  And they won't know to want it for their own children.

And they won't be lonely.

And that might be the saddest thing I could ever imagine.