As we have traveled (and travailed) through our journey (ha!) with infertility struggles, I’ve learned a lot from the infertility blogs that I’ve read, and from our family and friends. While I do have to put myself on hiatus from infertility blogs on a regular basis, I am so thankful that we have not been alone through this continuing nightmare.
I had a conversation recently with my mother about my blog, and why I choose to make such a private issue so public by putting it all online. Well, if one person finds the Lord, learns anything about their own infertility and what to expect, or is helped in any way whatsoever, then this has not been in vain. That may mean just helping someone who is not infertile to understand what the people around them are going through.
Or letting someone several years into this roller-coaster know that they are not alone, either.
As others have done for me, I will do for them. This post is in that vein….
…Depressing. There is no end to the feelings of failure, shame, and envy. Every Mother’s Day, Father’s Day, or any other important holiday that passes without a baby in our lives is a kick in the teeth. Some days simply getting out of bed is too much effort. But we do it, so as to appear normal.
…Frustrating. To not be able to do something so simple is incredibly frustrating. We cannot do what our bodies were designed to do, and everyone around us can.
…Humiliating. Everyone has seen parts of me that should be private. Everyone knows intimate details of our sex life and feels that discussing them is totally acceptable. Our pharmacist is nosy. Our doctor asks questions that make me blush, and I am not easily embarrassed. There is no modesty in infertility. Even at our very thoughtful clinic, I am stripped from the waist down and given a sheet roughly a half yard wide to “cover” up with. My bare butt faces the door.
…Learning to laugh. A man who loves you when Clomid makes you grouchy and when you have to prop your hips up afterward will love you through anything. If you can discuss cervical fluid and peeing on a stick, he’s a keeper. If we don’t laugh at the absurd, we will cry over everything.
…Isolating. Even though over 10% of all couples in the US experience infertility, you may never meet or talk to another. None of your friends can fully understand, and your family may not try. When your infertility is all you can think about, they may not feel comfortable talking about it at all. Our infertility is never mentioned for the prayer requests at church. It is the elephant in the corner at every baby shower. In the waiting room of our fertility clinic, no patients make eye contact, ever. Infertility is not something you tell folks about unless you know you can trust them with your heart.
…A learning experience. Not many things give you the chance to learn to self-inject medications and learn words like hysterosalpingogram or ovarian drilling.
…Painful. Physical changes make my body hurt. Side effects cause aches, pains, and headaches. Injections and blood draws hurt, internal ultrasounds and hysterosalpingograms are very painful. Childbirth actually sounds like a cakewalk after some of this.
…Strengthening. If I can handle this, I can handle anything. So can my marriage, and my faith. Infertility is not for wussies.
…Taxing. “Trying” or “practicing” sounds fun, right? Try it for about two weeks and see how romantic you feel. Don’t forget to time it just right and to prop your hips up afterward.
…Disappointing. Every holiday without a baby, every month with a period, every new check up at the clinic because last month was a bust is a huge disappointment. Telling my husband we’ve failed again is miserable.
…Scary. Words like premature ovarian failure, premature rupture of membranes, incompetent cervix, and intrauterine fetal demise are terrifying for anyone to hear, especially when it’s your ovaries, cervix, or baby.
…Hope. Hope is new again each month, thank God.
…Expensive. Having to give up on your dream to have a baby or having to plan your baby around your credit line is just sad. Especially when you’re paying good money for useless insurance.
…All-consuming. If you don’t learn to stop and find other outlets, infertility will eat you alive.
…Unfair. 14 year old junkies have babies they don’t want. People who lock their kids in closets get pregnant all the time. Why can’t I?
…Eye opening. Many men will leave you when they find out you can’t have babies. The extra-awesome one will stay, look you in the eye and say “That’s okay.”
…Finding a way to trust God and His timing even when I am on the floor, crying and broken.
There is a picture of me, somewhere out there, probably still on my dad’s phone unless they’ve turned into Christmas Card people, in which case, the picture is most definitely out there in the world for all to see.
I hope it is not.
I didn’t see the picture until I was 5 months sober, staying in the unfinished basement at my parents house, grateful that I was no longer homeless, while I hunted for a job. Before this, I’d been staying there after a stint at a ramshackle, rundown motel, the kind of place you probably could dismantle a dead body, leave the head on the pillow, and no one would think anything of it. But it was my room, and despite the lice they gifted me, I loved it. Until money dried up and suddenly I was, once again, homeless. I’d moved in there after I was discharged from the inpatient psych ward, in which I was able to successfully detox after a suicide attempt. Got some free ECT to boot.
Despite what you see on the After School Special’s of our childhood, I didn’t take a single Vicodin, fall into a stupor, and become insta-addict – just add narcotics! No, my entry into addiction was a slow and steady downward spiral of which I am deeply ashamed. It’s left my brain full of wreckage and ruin, fragmented bits of my life that don’t follow a single pattern. Between the opiates, the Ketamine, and the ECT, I cannot even be certain that what I am telling you is the truth; what I’ve gathered are bits and pieces of the addict I so desperately hate from other people who are around, fuzzy recollections, and my own social media posts.
About a year and a half before I moved from my yellow house to the apartments by the river, Dave and I had separated; he’d told me that while he cared for me, he no longer loved me. While we lived in the same house, we’d had completely separate lives for years, so he moved to the basement while I stayed upstairs. I’d been miserable before his confession and after? I was nearly broken. Using the Vicodin, then Norco, I was able to numb my pain and get out of my head, which, while remarkably stupid, was effective. For awhile.
Let me stop you, Dear Reader, and ask you to keep what I am about to say in mind as you read through this massive tome. I’m simply trying to make certain that you understand several key things about my addiction and subsequent recovery. I alone was the one who chose to take the drugs. No one forced me to abuse opiates, and even later, (SPOILER ALERT) Ketamine. This isn’t a post about blaming others for my misdoings, rejecting any accountability, nor making any excuses for the stupid, awful things I’ve done. I alone fucked up. My addiction was my own fault. However, in the same vein, no one “saved” me but myself. There was no cheeky interventionist. No room full of people who loved me weeping stoically, telling me how my addiction hurt them. No letters. Nothing. It was just me. I was alone, and I chose to get – and remain – sober.
The delusions started when I moved out, sitting in my empty apartment alone, paralyzed by the thought of getting off the couch to go to the bathroom. Always a night-owl, I’d wake at some ungodly hour of the morning, shaking. It wasn’t withdrawal, no, it was pure unfettered anxiety.
It was the aftermath of using so many pills, all the fun you think you’re having comes back to bite you with crippling anxiety and depression.
Which is why I’d do more.
Yes, opiates are powerful, and yes, I abused them, but things really didn’t become dire until I added Ketamine to my life.
Ketamine, if you’re unaware, is a club drug, a horse tranquilizer, and a date rape drug. You use too much? You may wake up at some hipster coffee bar, trying to sing “You’re Having My Baby” to the dude in the front row who may or may not actually exist. In other words, it’s the best way to forget how fucked you are.
The delusions worsen as time passed. I could see into the future. I could read your mind. I was going to be famous. I was super fucking rich. In this fucked-up world, I could even forget about me, and the life that I’d so carelessly shattered. I remember sitting in Divorce Class at the courthouse, something required of all divorces in Kane County, weeping at all that I’d thrown away – using a total of three boxes of the low-quality, government tissues. I left with a shiny pink face and completely chapped nose and eyes that appeared to be making a break from their sockets. I went home, took some pills, took some Ketamine, and passed out.
I retreated ever-inward. I didn’t talk to many people. I didn’t share my struggles. I was alone, and it was my fault.
The hallucinations started soon after Divorce Class ended and my ex and I split up. He’d left my house in a rage after a fight and went to live with his sister. I got scared. His temper, magnified by the drugs, the hallucinations, and the delusions, grew increasingly frightening. Once he’d moved out, the attacks began. I’d wake up naked in my bedroom, my body sore and bruised, and my brain put the two unrelated events together as one – he was attacking me. It happened every few days, these “attacks,” until I found myself at the police station, reporting them. I was dangerously sick and I had no idea.
My friends on the Internet (those whom I had left), sent me money for surveillance cameras. I bought them, installed them – trying to capture the culprit – and when I saw what I saw, I immediately called the police and told them the culprit.
The videos in my bedroom captured an incredibly stoned, dead-eyed, version of myself, violently attacking myself, brutally tearing at my flesh. In particular, THAT me liked to beat my face with one of my prized possessions – a candlestick set from our wedding, take another pill or hit up some Ketamine, then violating myself with the candlestick. It lasted hours. I’d wake up with no memory of events, sore and tired and unsure of how I’d gotten there.
I’d never engaged in self-injury before – not once – so the very idea that I’d hurt myself was unbelievable, but right there, on my grainy old laptop, was proof of how unhinged I’d become. Charged with filing a false report, I plead guilty.
In early September of 2015, I decided to get fixed, and made arrangements with work to take a few weeks off to do an inpatient detox, and, for the first time in a long time, I woke up happily, rather than cursing the gods that I was still alive.
It was to be short-lived.
Several days later, sober, I was idly chatting with my neighbor about her upcoming vacation (funny the things your brain remembers and what it does not), standing by my screen door, when karma came calling. It sounded like the shucking noise of an ear of corn, or maybe the sound that a huge thing of broccoli makes when you rip it apart – hard. It felt like a bullet to the femur. I crumpled on top of my neighbor and began screaming wildly about calling an ambulance, yelling over and over like some perverse, yet truthful, Chicken Little: “my leg is broken, my LEG is broken!”
I don’t remember much after that. I woke up in (physical rehab) and learned that my femur (hereafter to be called my “Blasfemur,”) had broken, fairly high up on the bone, where the biggest, strongest bone in your body is at its peak of strength. Whaaaa?
The doctors and nurses shrugged it off my questions, with a flippant “It just happens” and sent me home, armed with a Norco prescription, in November, to heal. I added the Ketamine, just to make sure.
A couple of weeks later at the end of November, I was putting up the Christmas tree with the kids and my mother. It was all merry and fucking bright until I sat down on the couch and felt that familiar crunch. Screams came out of me I didn’t know were possible, but I’d lost my actual words. My mother stood over me yelling “what’s wrong? what’s wrong?” and I couldn’t find the words. I overheard her telling my babies that I was “probably just faking it” as she walked out the door, my screams fading into an ice cold silence. They left me alone in that apartment where I screamed and cried and screamed. Finally, I managed to call 911 and when they asked me questions, all I could scream was my address.
I woke up in January in a nursing home. When I woke up, I found myself sitting at a table in a vast dining room, full of old people. For weeks to come, I thought that I’d died and gone…wherever it is that you go.
This time, I learned, my (blas)femur and it’s associated hardware had become infected after the first surgery, which weakened the bone, causing it to snap like a tree. They put me all back together like the bionic woman, but the surgery had introduced the wee colony of Strep D in the bone into my bloodstream, creating an infection on meth. I’d been in a coma for weeks. Once again, I learned to walk, and once again, I was sent home in late January with another Norco prescription. The nursing home really wanted me to have someone stay with me to help out, but I insisted that I was fine alone. In truth, I had nobody to help me out, but was far too ashamed to tell them.
The picture I referenced above was taken some time in May, as far as my fuzzy memory allows me to remember, after my third femur fracture in March. This time, I’d been so high that I fell asleep on the toilet and rolled off. Glamorous, no? Just like Fat Elvis. Luckily, my eldest son was there and he called 911 and my parents to whisk him away. I remember my father on the phone, telling Ben that I was a liar and I was faking it. I was swept away in the ambulance for even more hardware, and finally? A diagnosis:
It’s an autoimmune disease that leaches calcium from the bones, resulting in brittle bones. It is managed, not treated. There is no cure.
But, I had the answer. Finally.
After my third fracture, I once again was sent to the nursing home, and quickly discharged with even higher doses of Norco, when my insurance balked, I’d used up all my rehab days for the year. By this time, I’d lost my apartment, my stuff was in storage (except the things that we’re thrown away, which my father gloated about while I was flat on my back) and my parents let me stay with them, which was about the only option I had. They couldn’t really kick me out if my leg was only freshly attached. I feel deeper into a depression, self-loathing, and drug abuse as I realized what a mess I’d made with my life. How many bad choices I’d made. How many people I’d hurt. How much I’d hurt myself. How much I loathed myself. How I once had a life that in no way resembled sleeping in my parents dining room. How I’d been a home owner. How I’d been married. How lucky I’d been. How I threw it all away. My life turned into a series of “once did” and “used to.”
The only one who hated me more was my father.
While we were once close confidants, in the years after my marriage to Dave, his disdain had become palpable. My uncle had to intervene one Christmas, after my father mocked me incessantly for taking a temp job filling out gift cards while I was pregnant with Alex. It may seem normal to some of you, this behavior, but in THEIR house, NO ONE was EVER SAD and NOTHING was EVER WRONG. WASPs to the core, my family is.
When I moved back in, broken, dejected, and high, our fights became epic. For the first time in my life, I stood UP to one of my parents. Then, I was promptly kicked out.
Guess I’m not so WASPy after all.
I want to say that the picture was taken around May of 2016, but my estimate may be thoroughly skewed, so if you’re counting on dates being correct and cohesive, you’ve got the wrong girl.
This is a picture of me, though you probably wouldn’t recognize me. I am wearing the blue scrubs that you associate with a hospital: not exactly sky blue, not teal, not navy, just generic blue hospital scrubs. These are, I remember, the only clothes I have to my name. I was given them in both the hospital and the nursing home, a gift, I suppose, of being a frequent flier, tinged with a bit of pity – this girl has no clothes, we can help. Whomever gave them to me, know that you gave me a bit of dignity, which I will never forget. Thank you.
I am wearing scrubs, the light of the refrigerator is slowly bleaching out half of my now-enormous body, as opposed to the darkness outside. There is a tube of fat around my neck, nearly destroying any evidence of my face, but if you look closely, you can make out my glasses, my nostrils, my hair cascading down. My neck is stretched back at nearly a 90 degree angle from my body, my head listlessly resting on the back of my wheelchair. My mouth gaped wide, which, should I been engaging in fly catching, would have netted far more than the average Venus flytrap. I am clearly, unmistakably, and without a single shred of doubt, passed the fuck out.
It is both me and not me.
High as i was, I don’t remember a thing about the photo being taken. But there I was, in all my pixelated glory.
By the time I saw the photo, I was once again in my “will do” and “can do” space. I’d kicked drugs in September 2016 and had found a job that I enjoyed. I stayed with my parents while I began to sort out my medical debt and save toward a new car and an apartment of my own. My spirits were high, my depression finally abated to the background, and I was tentatively happy. I’d apologized until my throat was sore, but my fragmented memory saved me from the worst of it, but I was not forgiven. I don’t think I ever expected to be. And now, I never will.
It’s okay. I can’t expect this. I know I fucked up.
My father, who’d actually grown increasingly disdainful of me, the more sober and well I became, confronted me when I came home one day after work, preparing to do my AFTER work, work.
My mother shuffled along behind him, Ben, the caboose. All three of them were in hysterics, tears rolling down their cheeks as I sat down in my normal spot on the couch. After showing them a video of two turtles humping a couple of days before, I eagerly waited to see what they were showing me.
What it was was that picture. Of the not me, me.
They could hardly contain their laughter, my father happier than ever, braying, “Isn’t this the best picture of you?” and “You PASSED OUT, (heave, heave) IN FRONT OF THE FRIDGE!” punctuated, with “I’m going to frame this picture!” The tears welled in my eyes while my teeth clenched, they laughed even harder at my reaction.
Like I said, if they’ve become Christmas Card sending people, this will be the picture of me they show, expecting others to laugh uproariously. Before I moved out, in fact, my father made certain to show the picture to anyone who came over. “Wanna see something hilarious?” he’d ask. Expecting memes or a funny cat playing the piano, they’d agree. I could see it when they saw it, my dad chortling with laughter, nearly choking on his giggles, the looks on their faces: a mixture of confusion and pity. Even in my drug-hazed “glory,” I’d never felt so low.
Maybe that picture is splashed all over the internet, in the dark recesses I don’t explore, and maybe it’s not. Maybe it’s hung on their wall, replacing all of the other pictures. Maybe it’s not.
Lyme has done some awful things to me. I think the worst are the feelings of despair, anxiety, loneliness. The physical symptoms are not permanent. And although it is sometimes hard to believe, the emotional and psychiatric symptoms are not going to linger forever either. No one can understand how disabling this can be if they haven’t walked this path. If I said I had cancer or MS, I think people would relate (“oh, so and so has that”). We’ve made those illnesses a part of our vernacular. Chemotherapy is almost universally understood. As a society, we know what to expect when someone gets those diagnoses. We are compassionate, sympathetic. I know when my dad was diagnosed with cancer, people came out of nowhere with cards, meals, time.
Lyme is not yet seen the same.
Late-stage Lyme is debilitating. But it is invisible. There is a great website called “But You Don’t Look Sick” that has some great stories about perseverance through invisible illness. I’ve been called a hypochondriac by people who claim to love me. That’s heart-breaking. I sometimes don’t have enough energy to get out of bed to make dinner. I certainly don’t have the energy to convince someone that my whole body hurts and that I have fatigue that can only be temporarily overcome by several large cups of coffee. I’ve realized that putting on that front though only makes it less obvious that something is wrong.
I don’t want to be a burden to those I care about, so I try to minimize my complaints. But truly, I feel very alone. When my dad was sick, I felt there was no other choice but to move in with him, make sure he was cared for, that healthy food was on the table, that he didn’t have to worry about driving home from chemo. Where is my caregiver? I don’t mean for that to sound desperate or clingy. I guess I just don’t understand. I would do anything for friends and family. Quite frankly, I have, sometimes to a fault to where I haven’t left anything for myself and my family.
I am ready to be healthy again. I want to have non-caffeinated energy. I want to be able to work out without feeling crushingly fatigued from lifting ten pounds. And I want a social life back. I know it takes time to maintain friendships, and I feel like I have lost my ability to do that. Mostly I’m just tired of being alone.
And being sick is just one more reason for me to feel distant from others.
I push myself everyday often beyond my better judgment. Lupus and Sjogrens are not diseases that I can beat into submission nor is the depression that comes along with the chronic widespread pain.
Yes, I want to do more, but why can’t you see I can only do so much and some days a lot less?
You need to know something else. When you don’t make the time to visit me? it breaks my spirit in ways I cannot adequately describe. I may be broken, but I still have value. I am worth the trouble it would take to make the trip to my house. I know you love me.
I wish you knew how much I need you to recognize this won’t go away by ignoring it and by default me.
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.