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.
But there’s nothing I can do about it.
I had a moment of realization this morning. I don’t KNOW that I have psoriatic arthritis yet. I’m clinging to this diagnosis, yet I haven’t seen my xrays. I haven’t seen the blood tests. Who knows what they say? I know something’s wrong. I know it’s not all in my head. But there are so many things it might be.
Let’s lay out, 100% what we know about me.
1) I have psoriasis. My elbows and feet are flaky, itchy, painful, masses of skin problems. I’ve had psoriasis for as long as I can remember. FOREVER.
2) My hands hurt. My hands hurt every morning when I wake up. It takes an hour of slowly moving my fingers to be able to get up and brush my teeth and hair. To get dressed. Sometimes I can’t handle buttons or zippers at all. Some days my husband has to open doors for me – not because he’s a gentleman, but because I can’t turn the knob on my own. Sad but true: I didn’t quit smoking to be healthier. Or to save money. I quit because I couldn’t consistently use a lighter or matches and holding something so narrow hurt my joints.
3) I have hyper-mobility syndrome. Every joint in my body extends past the normal set-point. This is partially why no one believes how much I hurt… my joints are still moving in the normal range of motion! But, doctor, they used to move MORE. Apparently that’s not enough.
What I know, 100%, is that I hurt. Sometimes a little. Sometimes a lot. Movement is good – to a point. Resting too long makes my joints stiff. I’m finding myself more frequently getting feverish without being sick. In general, my temperature is higher than it used to be. The shapes of my joints are changing. The color of my skin changes with the level of inflammation. When I hurt, my hands swell to twice their size or worse. My fingers look disgusting.
So, what’s wrong with me Doc?
I’m clinging to psoriatic arthritis because even though it’s life-long pain, there are treatments. It could get better. At the very least, it could stop getting worse. That’s all I’m asking for now – that today’s pain is the worst it is going to get.
*I know that not everyone out there is a Christian and I hope that nobody will take offense to this post. My faith is a very personal thing, but it helps me get through so much. My prayer is that everyone dealing with a life crisis will find something that will bring them peace and hope, whether it’s faith in God, faith in humanity, or faith in herself.
When I wrote about my miscarriages and TTC journey, it was the hardest piece I’d ever written. What I left out, though, was the behind the scenes issues. The emotions that I’m still ashamed of feeling. That probably sounds stupid. I mean, you can’t help how you feel about things so why feel shame? Well, it’s been six years and I still do, so I guess I can’t answer that.
When Jordan and I decided to start trying to get pregnant, we didn’t broadcast it, but we also didn’t hide it when people asked. And people did ask. We’d been married over a year at that point, and apparently that’s the time that everyone from your grandma to the cashier at the grocery store deems you ready to have a child. But when we realized we would need a little help expanding our family, we clamped our mouths shut. Our families and closest friends were the only people who knew what we were going through. But when we got that first positive test, we told everyone! I’ve never been the best at keeping my feelings under wraps and we were thrilled.
A few days before I got that positive test, my sister-in-law gave me the news that her sister-in-law was pregnant. I was pretty discouraged at that time thinking that the round of Clomid I had just finished had not worked. But here was this girl (who I love dearly, BTW) who had become pregnant accidentally. It hardly seemed fair.
But then I found out that the Clomid had actually done its job and all was right with the world again. I could be happy for my sister-in-law sister-in-law-in-law sister-in friend, if a little worried for her. After all, my faith had always dictated that “everything happens for a reason.” But then it all changed.
During the few days that encompassed the fateful ultrasound experience and gut-wrenching D&C, I lost more than my baby. I lost my faith.
I left the hospital a bitter, heartbroken person that I no longer recognized. I was angry at the world. I was angry at God. I didn’t go to church. I didn’t pray. I didn’t even sing; something that has always been my solace. For three months I was in this dark pit. Every time someone who didn’t know would ask about the pregnancy and we had to break the news again, I sank further.
At that time, I worked for an agency that provided low-income housing. It seemed like every other day I encountered another woman who was expecting yet another child that she couldn’t afford. All these women around me were getting pregnant so easily, some while actively trying to prevent it, and having the healthy babies that I wanted so badly. I couldn’t understand why I was being treated so unfairly. I couldn’t bring myself to go to the baby shower for my brother-in-law’s sister. Every time I saw a pregnant woman I would cry.
It kills me to finally admit those things. There are very few people in this world that I’ve told about that dark time. I still feel guilty for being so angry. But if my first miscarriage caused me to lose my faith, my second one brought me back.
My second miscarriage happened on a Saturday morning. I was in the ER for a few hours then sent home. The next day at our church was Youth Sunday. I hadn’t been to church in three months at that point, but Jordan’s best friend, David, was delivering the message that day, so I insisted on being there. Not many people at church had known I was pregnant that time, so we didn’t really have to talk about the loss.
Something happened that Sunday morning, though. The youth members all did a great job with their testimonies, prayers, and music. David delivered a beautiful message. And then the youth sang a song to tie it all together – Here I Am Lord. I had heard the song a hundred times before. I had sung it about half that many times. But that day, I actually listened to it. It suddenly spoke to my heart in a way I had never felt before. Thank God we were sitting in the balcony so the whole congregation didn’t see me burst into tears.
I suddenly was at peace. After being angry for so long, it was an incredible feeling to let go of it. In that moment I knew that, like Abraham and Sarah, we would eventually have a child. And that there was a reason for my losses. I knew that it was going to fall to me at some point to support others going through it.
I was able to do just that several months later when my best friend had her first miscarriage. I’ve reached out to others as well – old high school friends on Facebook, a friend at church, etc. It’s what I hope to accomplish by contributing to this site. It also sort of paved the way for me to do the same thing as soon as I was diagnosed with Rheumatoid Arthritis in 2008. Since then I’ve found myself in something of an online support network of people living with chronic illness. Without that moment of clarity, I’m convinced I would still be that bitter person. I’m sure that the RA diagnosis would have been much worse than it was, emotionally speaking. I honestly don’t know how I would have made it through either of my full-term pregnancies, much less through a certainty of life-long pain, had I not had that renewal of faith.
I didn’t tell anyone about what happened to me that day until a few months ago when Jordan and I had the privilege to see David ordained. I figured that was probably the right time to tell him about the impact he had on me that Sunday so long ago. Today, my relationship with God is the most important thing to me. Through Him, I can do anything. There are days when I just need a nudge and there are days when I’m forced to ask Him to carry me. And I’ve come to realize that everything truly does happen for a reason, even if that reason isn’t revealed during this earthly life. But the choices we make when facing hardship will usually go a long way to reaching that revelation.
“But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” ~ Isaiah 40:31
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.
I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
I handed off the box of Kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand his words.
Guess that’s panic for you.
After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.
Alex and Ben came in a bit after I’d gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn’t care what was wrong with her so long as she made it out alive. I begged God to take me instead. I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.
Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.
After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep.
Unsurprisingly to no one, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.
I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.
Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.
She told me to “relax” and then left.
I tried to “relax” which was as useful as punching myself in the face with a hammer. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.
I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.
Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.
Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.
(also: why are people in the Lamaze videos always naked?)
But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.
“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”
Again, she could have gracefully bid be farewell. But no. She kept on keeping on.
“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.
I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!”
I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.
I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”
And just like that, we went from critical to discharged in less than 36 hours.