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I Have Been So Incredibly Stupid…

If you read my first post, you know I lived with a man who couldn’t tell the truth if his life depended on it. He cheated repeatedly, all the while telling me he loved me more than anything, that he couldn’t imagine his life without me. He said I was his future.

Funny how he could never treat me that way.

He had stepped up his drinking to a horrible rate. He didn’t feel he should keep promises, like showing up at work, if he didn’t feel like it. He drank until he would pass out. I tried not to be co-dependent, but his clients know me, so I was always the one who was stuck having to tell people he wasn’t coming. He certainly didn’t care if we had money to pay the bills on time.

I worked consistently from the time I was 18 until I had to go on disability. I had beautiful credit, so that was what we lived on. BIG mistake on my part.

He went to rehab, lied his way through it and was released after 90 days. He was drinking again within two weeks. He went back and forth to rehab a couple of times, but he always lied and would be drinking again as soon as he was released. It got so bad that I kept getting calls from the fire dept, police, or paramedics. They would find him passed out in a park, and tell me I needed to pick him up. They would never help me. They would lecture me about how he needed help, as if I didn’t know, but for one reason or another, they couldn’t just take him to detox or arrest him.

One day, he drove drunk and thankfully only did damage to our car. I said I had had enough. I told him he needed to go stay somewhere else and think about what he wanted out of his life. He was drinking to maintain, and then went on a binge. He refused to answer my texts, even though I could see he had read them. I warned him he was setting in motion things that could not be undone. He still would not answer.

I am disabled, so I’m not able to work. He abandoned me with just $57 to my name. I have no way to pay the bills, no way to pay for my medications, no way to buy food. I waited, and finally, I filed bankruptcy. Just like that, my entire life’s work down the drain. I could not be more humiliated.

A week later, he finally decided to talk to me. He said he loves me, he just needs some time to work on being the right kind of husband. I told him I wasn’t sure the opportunity would still be there. So now, he’s calling me every night and telling me how much he loves me. Each night, he has sounded more and more intoxicated, so I know nothing has really changed.

I have supported him, through the drinking, for SIX years. He would always say he wanted to be sober, so I kept trying to help. Obviously, he doesn’t want to quit drinking. So, why do I feel so bad? Why do I feel like I’m letting him down, when he has never once been there for me?

When I had my knee replaced, he was too drunk to take care of me. He stole my pain medication, and I never did find out why. I guess he wanted to make me suffer through physical withdrawal like he has to when he dries out. Would someone who loved me put me through that?

I can’t forgive him for abandoning me with no money or food. He obviously didn’t care about me, so why do I still feel guilty and sad? I know I deserve better!

All That You Can’t Leave Behind

The desk is always manned by a sweet-faced volunteer to help you find whatever you’ve lost or find your way, except when, of course, you cannot find it at all. There are flowers there, too, beautiful flowers, always fresh flowers. Usually lilies are mixed in, fragrant lilies, reeking of death and funerals, but the flowers are so beautiful that you can almost forgive the scent that makes you want to vomit.

Over there is the place you cried until you dry-heaved as you took your infant daughter to her third MRI in her first week of life. And just past that is the chapel where you prayed for her life. The stained-glass windows during that frigid February day shone a cold bright light as your daughter slumbered through an anesthesia coma, and you tried to forget all that you knew about neurosurgery.

You prayed with all of your soul.

Above the chapel is the waiting room where you sat after you’d dropped your daughter off into the arms of her neurosurgeon, hoping that the last kiss you gave her warm, delicious head, wouldn’t be the last kiss you ever gave her. You sat in that waiting room with the three people who cared enough about you to show up and hold your hand and you choked back tears as the operating room nurse brought you back a bag of your daughter’s first hair in a bio-hazard bag.

You held that bag and wondered if that would be all you had left of her.

Below that waiting room is the gift shop where you dragged Nathan, someone who you will always treasure for being a friend when you needed one most, to buy your daughter something hopeful. A necklace. Carefully, you pick out a necklace that you will give your daughter and someday tell her, “Amelia, Princess of the Bells, Mommy bought you this when you were having your brain surgery.”

It’s a very beautiful necklace. A crystal encrusted heart on a simple silver chain in a velvet bag. It is perfect.

You hope she knows that this necklace is very, very important.

Two floors and a yawning corridor away, is the happy floor, filled with women and new babies, where your life was forever changed with seven words, “Becky, there’s something wrong with your baby.” A new world was created then, a secret place only you could go, this land of tears.

Your soul broke.

Up above that room, down another winding corridor, you screamed as they wrenched your nursing baby from you. Your breasts wept, too, as you cowered in that bed, terrified, in your secret place, your own land of tears.

In the dark basement, worlds away from the happy new parents above, you joined the ranks of the hollow-eyed ghosts in the NICU as you signed in and out to see your daughter. There, at least, you didn’t scare anyone with your eyes swollen nearly shut from crying and cheeks raw and bleeding from hospital grade tissues.

Above her bed there would be her bed post-surgery in the PICU and seeing her in a gown that bore the same logo as the hospital you’d worked at in nursing school made it almost easy to pretend this was all some vicious nightmare. That maybe you’d wake up to a normal, healthy baby.

Then your daughter would cry, her voice raw and hoarse from intubation and you knew this was your new world order.

When your other children came to see their sister, you’d rearrange your horrible face into a mask of what you hoped would pass as cheerfulness, ply them with candy, and hope that they wouldn’t look too closely at your shaking hands or tear-stained face. When they screamed, “I want MOMMY!” as they left for the day, you felt torn between the two worlds, one of which you’d just as soon leave behind, too.

All corridors eventually feed into the cafeteria, where you remember laughing for the first time in months. It was a jangled, strangled sort of sound, but there it was: a laugh, from your mouth, and it was real.

Down by the statue of the heart or perhaps children dancing in a circle is where you waited with your daughter as you took her home with you for the last time. Surrounded by all of the pink things you could find, balloons deflating slightly in the cold February air, you were exhausted, but ebullient: your warrior daughter had made it.

A mother had never been prouder. You held her car seat close to you as you whispered to her sleeping cheek, “You made it, my girl. You’re a fighter like your Momma, all right.” This time, for the first time in her life, when the tears wet her cheek, they were the good kind.

But late at night, when the rest of the house sleeps, these are the corridors that your mind roams, over and over. Your memory, photographic, can recall everything with the sort of clarity that makes you relive those days constantly.

You are forever delivering that sick baby.

Constantly having her wrenched from your arms, always back in those terrible moments roaming the halls, seeing the same desk clerk, smelling those awful lilies, dry heaving into the diaper bag.

The sadness is omnipresent and yet nowhere. It is the new world order.

Save for roaming the corridors all night every night, you haven’t been back to those halls since your daughter had those awful thick black stitches removed from the back of her head.

You must return. New problems, a new specialist, means one thing: you must face your demons and return.

A new desk clerk and a new flower arrangement await you in the official looking building in which you found absolutely no comfort and now you must face up to walking these halls once again. It’s likely that you’ll cry. It’s likely that you’ll dry heave. It’s likely that no one will understand your reaction to this big official building. It’s just a place, after all.

But this is so much more than a place. It’s where the old you shriveled up and died and the new you was dragged screaming into the world.

So you and your ghosts walk the corridors all night every night, reliving the worst parts of your life, wishing they could be laid to rest, knowing that they never will.

Ever.

—————

This post was written by Becky Sherrick Harks and originally published here, on Mommy Wants Vodka.

My Happiness Is Officially Ruined

Yesterday I wrote to the Band “One Year Ago” about the simple kiss that destroyed my life. Today, I get the news: the man who kissed me just got engaged to his partner over the weekend. The timing, or irony, is not lost on me.

I don’t know why God is punishing me this way. I can barely breathe or see straight from the heartbreak.

I now realize I’ve been lying to myself and everyone.  He’s not just a friend.  I love him so deeply with all my heart. I am crushed beyond words. I would indeed have left my husband for him. My marriage is already on the rocks because of that kiss, and my husband has no idea why I’m so distant.

Christopher, I truly and honestly love you. Please, please, please don’t marry her. She blames you for the death of the cat, and for so many, many things. She will never forgive you, and marrying her won’t make up for it.  I haven’t been able to tell you because you refuse to believe me. My heart is simply bleeding. I am the only person who truly stood by you this past year. Why can’t you see that? Why can’t you believe me?

Not Coping Very Well

A few weeks ago I was a victim of rape. While at a hens weekend in I was left alone by a fellow hen and awoke the next morning in a strange house to discover what had happened.

As I returned to the hostel I was staying in, crying and sobbing and in complete dismay, one of my friends phoned the Garda (a process I would have preferred not to take). I then had to go through the formalities – statements, giving clothing, swabs and blood etc. During my exam in the hospital, I was told I was pregnant (I have a long term partner) but unfortunately, within two days, I had a miscarriage. My partner and I were further devastated.

I cannot cope well with stressful situations, and we believe this to be the result of my miscarriage. I do not have the mental strength to pursue this case. I was told from the beginning it would be difficult to prove as alcohol was involved. I have no recollection of the event except for one or two flashbacks of saying “No.” It is a he-said, she-said type of scenario.

I have suffered with severe depression for years. This whole situation is not making anything better. I have almost tried to forget the situation. My attitude at the moment is “Well, I cannot remember, so it did not happen.” I know this isn’t the case. I know what happened to me, and I’m horrified, embarrassed, and just feel like an idiot. My partner had a gut feeling something bad would happen should I go on this weekend away. I had the same feeling, but I was being stubborn as always. Now, I have to deal with my stubbornness.

Every day, I blame myself. I blame myself for being a positive, chatty, and friendly person. If I’d sat in a corner and said nothing to anyone, who knows? This may not have happened. As the days go on, I feel I’m struggling more. I’m only thinking about making my partner feel better and come to terms with this situation. If I stop to think of me, I think I’ll fall apart, I don’t want to fall apart. I’m not coping, I’m not dealing well with this, but I feel like smiling and shutting this horrible time far into the back of my mind is all I can do.

Her Diagnosis

Thirteen years ago this past July our lives changed forever.

We had already suspected that something was not quite right with Anna.  She had stopped nursing after a few days.  I assumed that it was my fault, and since I was afraid that she was hungry, switched to formula and bottle feeding.  She did well with that for a few days, then it seemed like a challenge just to get her to drink an ounce.  We called the nurses on the maternity floor where she was born, and we were reassured that she probably just had gas and an upset stomach because of the switch and not to worry.

I was still worried, but we had our first post-natal pediatrician appointment the next day (July 25), so I knew we would get answers then.

In the mean time, I received a phone call from someone from the state of Michigan.  I’m not sure, my memories of that are vague.  I remember that she told me that Anna had potentially tested positive for one of the disorders in the newborn screening test, and we should go to the hospital to get blood drawn, to confirm it. I was concerned, but was still focused on our doctor’s visit.

When we went to see Dr. Simms, her pediatrician at the time, as soon as we were called back to the exam room, she greeted me, looked Anna over, then excused herself to get one of the other doctors. I guess she wasn’t sure how I would react to what she would tell me next.  When they returned, she explained that Anna had tested positive for maple syrup urine disease (MSUD*), it was very serious, and she was very sick. The only specialist in the state who saw patients was located at University of Michigan, and we were expected down there, and we need to leave as soon as possible.  I remember that her southern accent was soothing, and the other doctor gently held my shoulders and guided me to a chair, but my mind was in a fog.  I didn’t understand…. Anna was born healthy.  Both of her Apgar scores were 9.  That meant we were supposed to live happily ever after.

Right?

Right???

At the time Lance was working at Hafer Hardware, and it was lunch time. Dr. Simms allowed me to use the phone in her office to call him. I called the store, but he had just left for lunch.  And of course, this was before we had cell phones. I’m sure it was only a few minutes before he finally called back, but it seemed like an eternity.  After reaching him, Anna and I headed home to pack before we headed to Ann Arbor.

On the drive to U of M I poured over my “What to Expect” book.

MSUD wasn’t in there. I had heard of it, but only as an ailment of a serial killer in a crime novel I had read, not as a real disease.

When we got to the ER at U of M, Dr. Allen, a neurologist who treated patients with MSUD, and a gaggle of med students crowded into the small room. I remember that he removed Anna’s diaper and passed it around for the students to smell.  He then took a swab of her earwax for them to smell.  We were completely flabbergasted… what did he think he was doing?

We didn’t realize he was doing it to show the students that both smelled like they had been smothered in Aunt Jemima’s.

You see, there were signs that Anna has MSUD, but we never picked up on them.  She had a very high pitched shrill cry, but we joked that she’d sing opera someday.  By the time she was 3 days old, she tensed her muscles so tightly she rolled herself over.  We bragged that we had a wonder baby who was months ahead developmentally. Her diaper smelled sweet and syrupy.  We chalked it up to being new parents, and being so in love we thought her dirty diapers smelled good. And what we thought was fussiness with the bottle and me not being confident in nursing was actually because her brain had swelled so much that she lost the suck and swallow reflex.

By the time we were in PICU, she had an IV in her scalp, because she was so dehydrated that that’s the only blood vessel they could use.  She had an NG tube giving her nutrition.  She was hooked up to heart monitors and pulse-ox monitors.  She looked so tiny and helpless there in the bed. We had never felt so helpless as parents as we did then.  That day is one of the few times I’ve seen my husband break down and sob.

What information we were given about MSUD over the past few days was overwhelming.  Most of the official definitions included two very frightening likely outcomes: mental retardation and death.  The prospect of having a child with a restricted low protein diet was daunting too.  Would we need to become vegetarians, too?  If we wanted to eat meat, would we need to hide it from her, making late night drive-thru runs to satisfy our cravings? 

Those fears seem so trivial now, but they were so real to us then.

Over the next two weeks, Anna got stronger.

After she got out of the PICU, she was moved to a regular room.  After she regained some weight and was able to take feedings by bottle we were able to come home.  She was sent home with the NG tube, as she was still taking about a quarter of her formula that way.  Shortly after we got home from the hospital she grabbed the NG tube and pulled it out, flinging stomach acid all over me.  I should have known then that it would serve as foreshadowing for how the next thirteen years would go!

Thankfully, we were able to remove the tube after a week.

As I think back to those days, I also look ahead to what faces us.  When it comes time for her [liver] transplant, I know that we will face long days in the hospital full of tears, hope, fear, and prayers.  The big difference will be that this time, we will be filled with hope.

Hope that although we will be entering a new chapter full of uncertainty, we will be free of the fear that MSUD has caused over the past thirteen years.

*Maple syrup urine disease is an inborn error of metabolism.

Medical Mystery Tour

Riding the Medical Mystery Tour is SO MUCH less fun without the Beatles.

This is her story:

Oh how I loathe going to the doctor’s office. Unless I’m loaded up with snot, like I am today. When I’m loaded up with snot, I can get something to help the snot go away. When I tell the doctor that all the snot in my head is drowning my brain, he knows what to do to help.

Any other time I go to the doctor? Well… That’s an entirely different story all together.

Over the last six or seven years, I’ve lived with non-stop pain in the lower right quadrant of my abdomen. I’ve been poked, prodded and made to drink some of the nastiest shit in creation. I’ve had multiple exploratory surgeries and damned near every narcotic known to man. I’ve received FOUR different diagnoses for that could contribute to my chronic pain (PCOS, Endometriosis, Diverticulosis and Interstitial Cystitis), but I’ve never been given any kind of permanent clue as to what can be done to stop the pain.  I’ve been told that I can’t have such and such treatment for one diagnosis cuzz I’m being treated for another diagnosis. SO.MANY.YEARS. of never-ending bullshit have pretty much jaded me against much of the medical community.

Imagine my dismay to realize that it was going to start all over again.

I’ve been constantly dizzy since mid-January. Interestingly enough, it started about a week after I turned 30. I’ve had the continuous feeling that I’m on a boat and not in the “I’m on a boat mother fucker! ON A BOAT!” kind of way. (Which sucks cuzz I used to like being on boats, mother fucker. :-P ) Went to the doctor, who poked and prodded and couldn’t figure out a reason for the feeling, so he gave me some anti-dizzy shit and sent me on my way.

The day before Valentine’s Day, I decided to add passing out to the mix.

After many different tests, I’ve been diagnosed with Orthostatic Hypostension, which means that when I change positions (laying to sitting, sitting to standing), my blood pressure bottoms out and I wake up on the ground with no clue what happened. (Well, I don’t pass out every single time, but the potential is there.) As for the dizziness that never goes away? No clue.

I’ve had MRIs, CAT scans, heart tests… All to no avail. I get to trek on down to the University of Michigan at the end of October to see if maybe they can figure out what’s going on. So far, the only thing I’ve been able to find that fits all my symptoms has been MdDS, which apparently is very rare and can last anywhere from a few days to decades. Color me fucking excited. o_O (And just to clarify, I hadn’t been on any long trips in planes, cars or anything else, but I was INCREDIBLY stressed out due to finding out some things about my boyfriend/fiance that damned near destroyed me.)

Oh! But wait! It seems my body decided to throw another curve ball into the mix!

During all my testing to see why I’m always in pain, I was told that I’d never be able to have another child. My kidling is awesome, so while I hated hearing it, I figured that I’d at least been able to have one child, so I was lucky. Any time I was asked if I was gonna have another one, I’d always say I didn’t want anymore.

To me, it was easier to deal with the judgment of  being one of those mothers than to have to deal with the looks of pity and the empty condolences from people who never had to deal with the reality of not being able to choose whether or not they could get pregnant. After six years of being told it would never happen and having all kinds of unprotected sexing with no babies, I had pretty much come to terms with it.

Except in June, I found out that I managed to get myself knocked up.

I had a miscarriage scare in my seventh week, but things seem to be moving along well now (17 weeks). The thing that sucks is that being pregnant seems to lower my blood pressure even more, which presents a challenge.

I no longer leave the house by myself. I haven’t been able to drive since February. I have to walk with a cane, so I don’t appear to be drunk from all the stumbling around I do when I walk. I have to rely on anyone who might be willing to help me get to my doctor’s appointments and hope against hope that the offer of help isn’t just an empty promise. I lost my job cuzz I can’t work without someone in the same building, just in case I happen to fall or pass out. I don’t see any of my friends for months at a time.

And though I’ll probably never say it out loud, I’m fucking depressed as hell over this entire fucking situation. (Except for the Squishy – that’s what I’m calling the baby – THAT has me over the moon.)

I feel as if I have no one I can talk to. Whenever I go to my friends or family, I can see them tune out. I’m sure they want to be there for me or whatever, but they aren’t dealing with this shit on a daily basis. They just don’t understand and I don’t expect them to.

So, I sit in my house day after day, wondering if I’m ever going to feel better. Wondering how the fuck I’m gonna manage to take care of a baby when I can hardly keep myself from walking into the wall. Wondering if I’m ever going to receive a diagnosis cuzz I really want to know what the fuck is going on.

I’m always wondering if there’s someone else out there who might be going through the same thing. Not necessarily the same symptoms, but just the whole not knowing thing. And then I wonder if I sound like a whiny bitch when I carry on about what I’m dealing with. I don’t address this on my blog, for the most part.  While I have written about it a couple of times, I try not to focus on it cuzz I don’t want to appear as whiny or like I’m seeking sympathy or something. I hate to be pitied and I’m really trying to avoid seeing anyone feeling sorry for me, ya know?

Thanks for giving me a place to rant and rave. I don’t feel like I’m gonna told  be told to suck it up or some such shit, though now that I’ve said that I am TOTALLY expecting to get some comments like that. :-P

Is there anyone else who feels like they’re taking part in The Medical Mystery Tour?

Or am I really alone in this?