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.
I was bitten by a tick when I was ten. It’s the only tick bite I remember, though a large number of those with Lyme don’t remember a tick bite. There’s no way to know if this bite or another was the culprit. I do remember a rash on my hand the summer I was pregnant, and I now wonder if it was from a tick, but there is no way to know. I always had weird medical things happen as a kid though, so we have wondered if maybe it’s been dormant for many years. Your immune system has an amazing ability to keep things in check (even if you’ve been given a taste of that forbidden formula).
And your immune system is amazingly susceptible to stress, which arrived on my, well, ashy, crumbling doorstep when I was eight months pregnant.
I had Kellen and went into my six week checkup, where they did a pap, which came back abnormal (yeah, my fall pretty much sucked), and gave me a flu shot.
Four days later (and four days after returning to teaching) my face stopped working. I was home nursing Kellen (or trying) and tried to smile at him, at which point I realized I couldn’t move the right side of my mouth. Earlier in the day I had noticed that it felt like I was talking with braces on, like my lips were having to make way for an obstruction on my teeth, despite not having had braces in well over a decade. That morning I drank orange juice that tasted dull as well as had a Starbucks sandwich that made me question their place as a food establishment.
It turned out that my taste buds were not working on the right side. After I finished nursing Kellen I decided to go back to school to finish teaching. I was really scared but didn’t want to deal with it at the moment (because the only two options I could think of were a stroke and brain cancer). As I was driving down the road I lost my ability to blink my right eye. I turned around, and we went to the hospital.
The good news is that it wasn’t a stroke or brain cancer, though the way the doctor told me it was *just* Bell’s Palsy made it seem so benign as though I hadn’t just lost full functionality of one side of my face and now looked like this:
“Are you sure nothing else is wrong?” I asked the ER doc. I just couldn’t fathom that the nerves in my face would stop firing just because they felt like it. The doctor assured me that nearly all cases of Bell’s Palsy are spontaneous and have no other underlying cause than a small virus. (Had I lived in the Northeast, it is likely I would have been tested for Lyme then as Bell’s Palsy is common in Lyme and the first symptom of it moving into your brain, when things get really dicey.) They gave me anti-virals and steroids. (It was because of this I stopped breastfeeding.)
Dan and I decided to head down to San Diego. I had taken a leave of absence from work because I was overwhelmed. The stress of the fire and the rebuild was compounded by this new development, and I knew that I was spread too thin. It has always been hard for me to walk away, and while it was sad, I am proud of my ability to say, “I can’t.” We left the day after Thanksgiving, a trip that was nearly thwarted by an incredible and overwhelming sense of anxiety. I couldn’t sit down at all because I felt so antsy and uncomfortable. It was one of the only times I’ve ever had the urge to scrub a floor. It’s unknown if this was a natural progression of the Lyme or because I had been prescribed Zoloft to deal with the PTSD. It’s been posited that SSRIs may actually exacerbate Lyme symptoms in some people (many also find them helpful).
That was also the day that the dizziness set in, and it’s kept a firm hold on me for over a year. I spent the entire trip in San Diego sleeping. When I wasn’t, I was scared. I truly thought I was going to die but was afraid of going to the ER because I didn’t want them to think I was crazy. I wish I had gone while in California.
I made a deal with myself that I would make an appointment with my neurologist in January if I was still sick after Christmas. I scheduled an appointment. That week I woke up and felt fine, nearly canceling the appointment to see the doctor. At that point being dizzy was the biggest issue; it was debilitating and frightening. The symptoms came back strongly the day before I went to see the doctor It would be the first of many cycles but also the clue that led another doctor to Lyme disease nine months later.
At first I was diagnosed with Benign Positional Vertigo, which is caused by ear crystals shaking loose. The test for this is tilting your head back to see if it gets worse. It did. But the exercises didn’t work. So an MRI was ordered. While I passed the muscle tests with the neurologist and chiropractor I was seeing, I drop things a lot (more than normal), so I worried a lot about MS, especially because I was told that mid to late 20s was typical for age of onset. With every click on the MRI machine I just hoped that I didn’t have MS and if I did that the test showed it. I didn’t want to be sick, but I also wanted an answer to why I felt so badly.
I have a wonderful life. Great husband, great family, and I love my job…it’s not perfect, but it’s good.
Except…
For flippin’ migraines.
Growing up I got one in a blue moon and really, they were bad, but I wasn’t stressed out about them.
I’d just get one and think, “Oh, this sucks. I have a migraine.” And I’d take some medicine, drink some really strong instant tea and it would go away. Later, I’d get them and take a cocktail of Benadryl and ibuprofen to go to sleep and it wouldn’t be a big deal.
Five years ago, I woke up one morning, laid in bed for a little bit with my husband, got up and started to get ready to leave town for my grandmother’s funeral. I bent over to pick something up off the floor, stood up and next thing I know I hear my husband yelling “Jennifer! Jennifer! Open your eyes and look at me! Jennifer!” What the heck? Why? Then I realize I’m in a really weird position.
One doesn’t normally find herself sitting in her laundry basket.
Then I realize I’m still naked. Then I realize I need to throw up. Then I realize the only other time I’ve seen my husband so scared was when I passed out from a fever a couple years before. And can I say that since my step-son’s best friend at the time was one of the EMTs working, I’m really happy my husband didn’t call 911 so he could find me naked in my laundry basket? What does it say about me that I’m more worried about that than the fact that I was unconscious and naked in my laundry basket?
So that set off a round of doctors, emergency rooms, MRIs, CT scans, and heart monitors. And daily migraines. Yep, I said daily migraines. My husband’s thought is that I hit my head against the wall when I passed out, and maybe it knocked something haywire even though my head didn’t hurt and no damage has been found. The best news out of all of this is that I actually have a brain. I have pictures. It’s there. Contrary to some people’s belief I do have more than just empty space between my ears.
So I went 6 months having daily migraines. I was taking a cocktail of medications to manage the pain, because these are not normally the type that are aided by Imitrex or things like that. I had to take an anti-inflammatory, a pain medication, muscle relaxer, and my dear old friend Benadryl to get rid of the pain. And I needed to sleep. I was working in a place that had a lot of chemicals, so after 6 months of working half days we decided that it was best if I found a new job. So I did. And my migraines have dialed down to a couple a week.
I have two kinds of migraines, which is part of my problem.
I have the classic which is where you get the aura and have squiggly lines in your vision and it feels like someone is jabbing an icepick in your brain. Those are rare for me. Then I have my normal ones where it feels like the angel of migraines came with his boxing gloves to punch me in the left eye. It’s always the left side. And either I wake up with it or suddenly I realize, “Oh, hey, I have a migraine”. There’s no warning like the others. And with my normal ones there are three levels of pain. “Oh, hey, my head hurts. Ok.” is the mildest. Then there are the ones like today, “Crap my head hurts, but I can function so here I am, but leave me alone”. And then the worst are the “Oh freakin’ hell, somebody kill me now!”
Recently, I’ve been introduced to a new circle of hell – the DOUBLE migraine. Really?
Because the others weren’t bad enough? This is where I get one aura, my head starts to hurt really bad, then after that aura goes away I get another one about 20 minutes later. Seriously!
The pain from that is excruciating and double.
Along with my own personal pain and agony that goes along with these migraines, I have to deal with other people. Most of my migraines are like today. I look fine. I’m at work. I’m functioning. I’m typing a flippin’ blog for crying out loud. If you’re paying attention, I look like I’m a little off. But to the casual observer I look fine. Something may come up and I’ll say “Oh, I’ve got a migraine.”
But when they’re bad enough I need to call in to work, load up on drugs and sleep all day, I get “but you could work the other day”. Yeah, out of sheer force of will and there was too much I had to do. And then there’s my husband. He’s the only person on the planet I wish would get just one migraine. Just one. I don’t get them just to ruin his plans. I don’t get them because I just want to miss a day of work. I don’t get them to get out of cleaning. There are the granddaughters. God bless them. I hate it the most for them. There are times it is impossible for us to be in the same house when I have a migraine. And unfortunately, they’ve learned to ask “Do you have a headache?” when they come over and something seems off. They still need to be able to be little girls, so I try to tell whoever is responsible for them that they don’t have to be quiet and if they want to come give me a hug it is really okay. But most of all, it’s the people that want to offer me solutions. Like I haven’t tried everything already. And 5 1/2 years later, I have a pretty good idea what causes them, but you just can’t avoid the weather. Although, I kinda like my husband’s ex-mother-in-law’s idea…medicinal marijuana. I really hate being perceived as a whiny-a$$ baby who complains all the time, so I don’t share with many people.
So there’s my migraine rant. I hate them and they hate me. I hate that it inconveniences others.
Imagine being 21 and attending one of the most well-known public universities in the United States. You are studying something you love, having a blast with your girlfriends, and always on the lookout for a potential suitor. You’ve lost some weight and feel really great about yourself. You’re four months away from graduating (a semester early!) and starting your life.
Your future is at your fingertips.
And then you get slapped with your mortality and it feels like your world is crashing around you.
You know what? Sometimes the chemo, the vomiting, passing out, and the ever-present thoughts of death wasn’t the worst part.
Sometimes, the worst part was sitting on your parents couch at twenty-one, wishing you were going out to that amazing party with all of your friends. Or watching your hair fall out in chunks in the shower. Your beautiful, personality-defining red hair just washing away down the drain. Or realizing part of your soul died when you asked your dad to shave your head because you just couldn’t watch the slow process of it falling out any longer.
Sometimes the worst part was looking at yourself in the mirror and just watching the tears stream down your face as you realized that this is your new reality. You are a twenty-one year old woman and you are bald.
Maybe the worst part was the steroids. Good God those things are evil. In a matter of weeks you transformed from that trim, vibrant woman that you were so proud of, into a bloated, chemotherapy-ridden sick person. You have that look of cancer and it crushes you.
And then there were those few moments where you felt good. You put on nice clothes, brush out your fabulous black wig and get ready for a night of normalcy. The drinks start to kick in, you start talking to a handsome guy. One thing leads to another, he leans in to kiss you and goes to put his hand on the back of your head…. and you freeze. Because you know the second he touches you he’s going to feel your wig. Your cover is blown, you are not one of the normal girls. And the last time I checked, most guys weren’t looking for a date whose chemotherapy schedule would have to be worked around.
So then you just stop going out. You realize this is temporary and it may not be fair, but it was the hand you were dealt.
You live with it.
You stop sulking.
Hair grows back.
Weight can be lost.
Love is still out there to be found.
The bars aren’t going anywhere and you can graduate next semester.
They caught it early.
You are going to be okay.
Other people have it SO much worse.
You will still get that whole wonderful life that you always dreamed about.
I admitted my 10 year old son to a psychiatric hospital Wednesday night.
My son is mentally ill.
For years, I have apologized to people for who my son is. His behaviors or quirks were something that were spoken about quietly, like they were something to be embarrassed of – Like WE were embarrassed of him.
For years, I have defended myself, made excuses for a multitude of things – his medications, the therapies he receives, the fight for Special Education services, the way I choose to parent and discipline him.
Today, all of this stops. My son D is who he is. My job as his mom is to provide the best care for him that I can, to the best of my knowledge. I am not a sheep – being blindly led by psychiatrists and therapists. I do my research, and I am well educated about his associated Alphabet Soup diagnoses. He HAS to have medicine to function. I don’t let the staff at his school run over me at his Individualized Education Program (IEP) meetings. I am on staff at his school, plus I know the laws regarding special education.
D got the shitty end of the deal when it came to genetics. See, I understand the raging in his mind, and the lows where all you want to do is hide from the world in a closet. I have Bipolar Disorder, Type 1. So does his birth father. I am compliant on my medications. It took me 8 years to finally get it right. There were times I almost lost everything – my family, my job, my mind. I am grateful for those who stuck with me through the good times and the really dark, ugly times.
Everyone knows at least one person who suffers from mental illness. One in FOUR people in America suffer from some sort of mental illness. Yet, there still is a stigma.
Today, for my D and me – this WILL STOP. No longer will I apologize for his behavior to strangers in public because he is on overload or having a meltdown. I will no longer listen to people tell me that my child is on too much medicine. I will not let people tell me I baby him when I choose to talk him down from a rage rather than “spank that ass.” I will keep fighting for his equal treatment at school. He has a mental illness, but he is a bright, smart boy. I will love my child for who he is, not for what others think he should be. I will not listen to negative ex-husbands telling me that I am doing it wrong, when he is only with D four days a month and only is “Dad” when he wants to be.
Today the stigma will stop. Follow me on my and my family’s journey.
i’ve written before about my love hate relationship with the pump… well, mostly about the hate portion. its rhythmic sucking makes me sing little songs to its always irritating tempo. then they mix around with the gymboree songs already stuck in my head. then i realize how badly i really do need the prozac and ativan.
i don’t know for sure how long it’s going to last. i’m trying to be realistic about the prospect of having cancer, undergoing chemo and pumping for (hopefully only) six months. it’s kind of like starting out nursing. i tried to limit my expectations of myself. i said i’d aim for six months and then see if i could go for a year. that seemed ridiculously long to me at the time, much like pumping for six months does now. but a year came and went and well, here we are.
my husband, nugget daddy, stayed down at my parents’ last night so nugget and i have been left to fend for ourselves for the majority of the past two days, save for a playdate and lasagna drop off yesterday afternoon.
i didn’t get to pump at all yesterday. i can’t pump in front of my daughter, nugget. that would be like asking your pregnant best friend to take you to happy hour. i meant to pump last night once she went to sleep, but i fell asleep, too. my boobs had been angry ever since.
nugget likes to have her naps with me, but this limits my options for the duration of naptime as to what i can actually accomplish with twenty pounds of sleeping toddler strapped to my chest, lovely though as she feels snuggled against me. her grandmamie puts her to sleep in the stroller and i bribed her into it with chocolate chips this afternoon so i could pump, finally, and subsequently blog about it. lucky you!
i was so angry the first few times i pumped after starting chemo. it was like rubbing salt in the wounds. i couldn’t nurse nugget and i had to stand uncomfortably in the bathroom watching my milk fill up plastic bottles instead of a happy baby. and then as i would dump the ounces of heartache down the sink a new wound would appear like a gaping mouth to catch my salty tears and sting my aching soul. what a waste.
you won’t find much if you google “cancer” and “breastfeeding” except for articles about nursing after breast cancer. “chemo” and “breastfeeding” yields the same contraindication tagline over and over, and “cancer” and “breastmilk” mostly just points you to article after article about this guy who drank breastmilk to fight his prostate cancer. those, mostly sensational and local news, articles mention milk banks selling milk to cancer patients when they have excess available to sell. it costs $3 an ounce.
i’ve had plenty of time to think about that guy and those $3 ounces while making up songs to the pump’s rhythm and calculating how much i’d just poured down the drain. warning! here comes the crunchy freaky part. squee! maybe you want to stop reading, uptight next door neighbor guy or old school grandpa, maybe there’s a golf game you’d rather be watching. okay, so seriously, why the fuck would i want to keep dumping my milk down the drain when other cancer patients are paying good money to get their hands on it? i don’t know what exactly it might do for me, but it sure won’t be doing anything at the bottom of the sink that’s for sure. so i sucked it up and sucked it down.
it was sort of gross at first, though why exactly i’m not sure. i think it was the temperature. i can’t think of any beverage i regularly consume at body temperature. but now i’m used to it and pleased by thought that i might actually be doing something to help save my own life.
so, now i have a new goal. i want to pump twice a day for the whole six months, or however long it might be. i know i might get sick. i know i might have to stop if i do. but if i approach it the way i did breastfeeding, then maybe i can make it through. maybe if i tell all of you about my plan then i’ll be hell-bent on reaching my goal. maybe some mother out there trolling the interwebs for a glimmer of hope will find my blog now, instead of all the other useless crap i found.
