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I Have No Reason For Being Here

by | Oct 12, 2015 | Anger, Anxiety, Coping With Depression, Guilt, Jealousy, Loneliness, Major Depressive Disorder, Mental Illness Stigma, Mood Disorder, Shame | 3 comments

It’s that deep, dark place I visit after spending days or weeks traveling into. The place where I’ve found myself dejected, sad, rejected, angry, jealous.

Angry at the world for not giving me what others have received.

Tears falling as I realize I’m in the place where I don’t deserve to be. I have no reason for being here. Nothing concrete has put me here.

Only in my mind have I traveled here.

The dark hallows of my mind have brought me to this place where I don’t belong.

Even in my depths, I’m outcasted.

Other people belong here. Other people who have suffered, who have been brought here not by their own mind, but by outside forces beyond their control.

Death. Disease. Sickness. Suffering.

Those people, affected by depressing situations, belong here if they happen to arrive.

Not me.

I have no reason for being here.

Yet here I am.

Sad. Jealous. Angry. Crying.

As with everything, and with every time, it will pass.

And it will not look to be this bad from the other side.

Parenting Is Not A Competition

by | Oct 10, 2015 | Anger, Anxiety, Attention-Deficit Hyperactivity Disorder, Denial, Developmental Milestones, Family, Feelings, Help with Parenting, How To Help A Parent With a Special Needs Child, Impulse Control Disorders, Individualized Education Plan, Parenting, Special Needs Parenting | 7 comments

In kindergarten, my daughter was singled out by her “crazy old lady/about to retire” teacher who said Maddie was “very inattentive and probably needed to be evaluated for ADD.”

I was all, “this women has a whole SEVEN kids to look after with a damn assistant!  She obviously is lacking and totally sucks at life to not be able to handle SEVEN kids and she’s the one who needs to be evaluated. “

Unable to even fathom such a thing for my perfect little princess, I took her out of the expensive private school and started first grade in the public school. The local school a few blocks away is really new and great and shiny!

First grade began, and she seemed to be doing well until our first Parent/Teacher conference. Once again, ADD was brought up by her very young, energetic teacher.

Again, I couldn’t wrap my brain around this possibility. My daughter was so caring and sweet and there was no way in living hell there was something wrong with her!

But I relented, and took her to see the pediatrician armed with a heavy dose of internet literature regarding the scary ADD possibility.  What I didn’t expect was to identify with most of the symptoms listed on the checklist.

So, with a heavy heart, I accepted that yes, my little angel was indeed struggling in school.  She was beginning to show signs of a low self-esteem as a result of her poor behavior.  She was showing the insensitiveness that comes with a child with ADD.  She was unable to see how others may feel. She was pretty self-centered.

I waved my White Flag and tried to stop feeling sorry for myself or guilty for something I could have done to prevent this from happening.  I gave up the idea that my daughter would be a stellar student and be the top of her class.  I mourned (seriously GRIEVED) the possibilities I had built up all through her early years of how magnificent she would surely be.  I shed real tears and experienced a heartbreak that I didn’t think was possible.

I felt extremely defeated until I buckled down and became her advocate. I fought long and hard to get her school to become involved in her special education program that would work for her. I went full speed ahead with every behavior modification the school could provide that might make a sliver of a difference.

Over the years, she was given an Individualized Education Plan (IEP) with in-school modifications for test-taking and a more thorough explanation for her assignments.  Her seat was moved in order to minimize distractions and although she continued to struggle, she was really improving.

Along with the modifications, we began trying medication.  I was overjoyed when we finally found one that really helped her without the harsh side effects.  This process was heartbreaking, but we found the one that works for her and for this I am grateful.

So now, here we are in the fifth grade.  Report card comes home and finally there are mostly B’s on it. There are two C’s, but compared to last year when she was mostly C’s and D’s this was such an amazing moment for me and her to see everything we were doing was paying off!

I was so excited that I wanted to dance around the room; this was not something that I am used to.  This was something that has taken so long. I didn’t even it was possible to see a report card such as the one she got today.

After saying all of this, maybe you can understand why, after sharing with you my pure bliss, I would be upset when you complain to me, a whopping two minutes later, about the one B your daughter received on her report card when every other grade was an A.  How I got frustrated, left the room and didn’t want to show you my daughter’s report card.

I do not make this a competition, as you so rudely accused me of.  I would never have those sort of expectations for my daughter after every hurdle we have been through to get her to this point.  That would just be unrealistic.

I know that your daughter is two years younger than mine and is enrolled in all advanced math and reading classes.  I know that she is a very bright little girl and I would never ever try to diminish that!  But I had a happy moment and you just don’t understand how complaining about that one B would make me feel. Here I was rejoicing all the B’s that were on Maddie’s report card and you were looking down on that very same grade; the one flaw on your daughter’s perfect grades.

So, just when I think we know everything about each other I suppose you don’t really know the entire story of the ADD path.  And I don’t even know how to make you understand.

When you told me I was turning it in to a competition, it felt like a slap in my face.  It showed me that your perception of me is way off.  So now what?  How do I make this better?  After three and half years together, I love you.  But I need you to be on my team with this.  Not accuse me of a competition.

I wanted you to jump up and down with me and celebrate this victory.

Am I Ruining My Children? Am I A Bad Parent For Having Them?

by | Sep 25, 2015 | Anxiety, Anxiety Disorders, Coping With Anxiety Disorders, Coping With Depression, Depression, Guilt, Major Depressive Disorder, Mental Illness Stigma, Sadness, Shame, Stress | 8 comments

Many parents struggle with mental illness. She wonders if she should’ve had kids at all.

This is her story:

For as long as I can remember, I have been a touch crazy. I have suffered from anxiety and depression most of my life.

I was five years old when I had my first panic attack. Only five! I also worry about absurd things; I know they are absurd but I can’t stop worrying.

But now, it’s worse. I don’t remember it ever being this bad. In the last month alone, I have suffered six nervous breakdowns and I wonder what is wrong with me?

WHY am I SO FREAKING CRAZY!?

But what makes it worse is my children. I don’t want them to suffer with me. I don’t want them to know I am this way. I don’t want to mark them or make them afraid for me or themselves. I try to keep it all bottled up and away from them so they don’t really know I am suffering. The only people who know are my husband and my mother, and they aren’t always a huge help. My husband thinks that I should just suck it up and deal. That’s not easy to do. My mother tries very hard to understand what I am going through and help me because I know she watched my grandma suffer at times quietly just like me.

My grandma’s suffering hurt my mom, and that’s what scares me. What if I think I am suffering quietly but my children know? But how could they not? Sometimes a shower is more than I can bear and getting out of the same pajamas I have worn the last three days just doesn’t seem possible.

So they have to know right? Hell, they are 8,7, and 5; not exactly babies. My eldest has Asperger Syndrome and this ridiculously genius IQ; if any of them could figure it out would probably be her. I am so scared of them knowing. I don’t want to be crazy mommy who has meltdowns. I want my children to know me as happy and loving. I know I am loving, but I’m not always happy. And I don’t EVER want them to think it’s because of them. So do I talk to them? Do I explain to them, this is what is going on with mommy?

It’s not you it’s me? God I hate that.

Are they old enough to know?

Or should I leave them in their little children bubbles? Am I hurting them being this way?

Do you think they know?

My next biggest worry and fear is this: in my children I see some of my crazy. My eccentricities, if you will. My eldest, who has Asperger Syndrome, has her own eccentricities. But my son (whom I did not birth) also has these eccentricities, a touch of my OCD, and the anxiety (who could blame him with a mother like his; heck, thinking about me probably makes him sick and nervous). But my youngest daughter scares me the most. She is a very nervous child who worries just like I did. She is scared of so much. She has OCD already at five. No panic attacks yet, but I fear it may only be a matter of time. This bothers me more than I can say. I feel like I did this to her. I feel responsible and God help me I don’t want her to grow up like this. I don’t want her to suffer like I have. I want her to be well and happy and not have fears of irrational things. Therapy is an option.

It didn’t always do me much good, but at times it really does help.

But what kind of mother, who knows she has these illnesses, brings children into the world when they may end up just like her?!

This is my struggle.

Am I bad parent for bringing them into my crazy existence?

How do I handle my crazy so I don’t mark my children? How do I handle my mental health without scaring them?

Her Diagnosis

by | Sep 20, 2015 | Anxiety, Fear, How To Help A Friend Whose Child Is Seriously Ill, Maple Syrup Urine Disease, Pediatric Caregiver, Pregnancy Complications, Stress, Trauma | 3 comments

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

by | Sep 14, 2015 | Anger, Anxiety, Diverticulitis and Diverticulosis, Endometriosis, Feelings, Hope, Interstitial Cystitis, Loneliness, Medical Mystery Tour, Pain And Pain Disorders, Polycystic Ovarian Syndrome, Pregnancy, Stress, Trauma | 18 comments

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?

My Lyme Disease Story Part II

by | Sep 13, 2015 | Anxiety, Bacterial Infectious Diseases, Caregiver, Chronic Illness, Fear, Grief, Help For Grief And Grieving, How To Cope With A Suicide, How To Help A Friend With Chronic Illness, Infectious Diseases, Invisible Illness, Lyme Disease, Stress, Suicide, Trauma | 3 comments

Click here for Part I

Everyday I feel like I am going to die.

It’s pretty difficult to sleep at night when you are afraid that you won’t wake up in the morning, leaving your 18 month old motherless. And in the *capable* hands of your husband who, when it’s his night to make dinner, relies on boxed Mac and Cheese. Without me he’d probably revert back to Kraft, leaving organic Annie’s behind.

Neurologic disorders are their own beast, I think. The symptoms are literally all in your head, and yet you feel them everywhere. My feet tingle. Sometimes I can’t stand the feeling of pants on my legs because my nerves are hyper sensitive. My hands go completely numb some nights. Just a minute ago I was pretty sure that my tongue had stopped working and that maybe I was having a crazy allergic reaction. When I touch the skin of another person, sometimes it feels like it’s burning.

I’ve been to the ER too many times this last year. At first it was chest pain, which was treated with Ativan. Turns out I have chest wall inflammation. Advil was much more helpful than the anxiety drugs, but I’m a woman so must be crazy. Then I went to a doctor for what felt like the flu in the height of the swine flu outbreak. She listened to my heart, which had become tachycardic. She thought I was having a thyroid storm. Nope. Just Lyme disease. (It would have been helpful to know it was Lyme then.)

Lyme is also extra special because it causes psychiatric changes. Remember IRENE from the Real World? Don’t you wish you were my husband? I swing between uncontrollable anger to lying on the floor thinking about death. Suicide is actually the leading cause of death for people with Lyme. When I was first diagnosed and reading about the disease, I couldn’t figure out why there were links to suicide prevention lines. I get it now.

And then there’s the memory deficits. I’ve always had a really sharp memory. My mom hates me for it. Pray that your children don’t remember every phrase you ever uttered to them! I’m also a word freak and can kick some serious Scrabble ass. But now, I have trouble remembering the word for “countertop” (yep, happened the other day). I don’t know how to spell things. And I often just stop in the middle of a conversation unsure of what we were talking about or what I was saying or what I want to say next.

My stomach hurts. My knees ache. I lose my sense of taste sometimes. I can’t sleep, and yet I’m profoundly exhausted. I get night sweats. Bright lights bother me. And low lights bother me even more. I feel jittery and can’t sit still. But I’m too tired and sore to move. And I constantly feel like I’ve just gotten off a Tilt-A-Whirl, that’s how dizzy I am.

This is my life. I don’t tell you this for sympathy. I tell you it because it’s real. And frankly it scares the shit out of me.