It’s one in the morning on New Year’s Day. I’m alone in my room savoring the last taste of mini-chocolate donuts before my medicine kicks in. Once it does, I get so nauseous that all I can do is lay still and hope that I can sleep.
When the clock hit midnight, I was lying in bed watching a documentary about obese people on my computer.
I was alone.
The only “Happy New Year” wishes I got were two texts. One was from a wrong number. The other was from one of my friends that I’m in the process of losing touch with; I suspect it was a mass message to everyone in her phone.
My mom and sister were downstairs, but they made no effort to come see me. I’d snapped at them earlier, so they left me alone. My boyfriend didn’t say anything either. I haven’t heard from him since seven, when he said he was sorry for not coming over because he was tired and in a meh mood. I’m guessing he fell asleep.
I’ve spent most of that time crying on and off.
You see, the problem is that I’ve spent the last three days with a pain in my left side, and while it fades in and out, it’s been getting worse. Normally this wouldn’t bother me too much, but in the last three weeks I’ve been in and out of doctors’ offices. I started off with a Urinary Tract Infection (my third since May), and after being off of those antibiotics for a day, I developed an ear infection. While I had my ear infection, my allergies ran amok, and I had to get a special nose spray to allow some sinus tube to open back up. I just finished the antibiotics for the ear infection yesterday morning.
All of this would be overwhelming enough by itself, but this happened after almost an entire year when I didn’t go one week without something happening to make me stop what I’m doing and curl up on the couch and wait for it to go away.
All of this has happened because I have fibromyalgia.
I’d explain what fibromyalgia is to you, but I don’t even know myself – my doctors don’t either. They THINK it’s nerves over-reacting and sending out false pain signals. But if that were all there was, it wouldn’t be associated with so many other things. If you stop by any fibromyalgia website, you can click on a page and find a long list of associated diseases and ailments. All of them aren’t even listed.
As if the pain and stiffness weren’t enough, now I have Irritable Bowel Syndrome, chronic fatigue and insomnia, sensitivity to temperature and certain chemical smells, loss of concentration, and worse, anxiety. I hope that my reproductive organs function properly, because I want children one day (Even though I already know this might not be true. I’ve had one cyst and irregular periods so my doctor threw me on birth control a few years ago and that was that.)
So I have my pill cocktails for this thing and that thing, and I have patterns I need to follow or else something will flare up. There’s an even bigger problem with all of these things: I’m nineteen.
I was diagnosed with fibromyalgia at sixteen, and for a while it looked like it was being managed by medication. I was able to function and go to school and go out with friends. It would flare up every now again around my periods and during the winter, but it was still manageable…until January of this past year.
My doctor decided to switch me to a new drug for fibromyalgia. This drug was hardcore. It came in a trial in this little book container. I had to ease into it because it carried some potentially harsh side effects. It was hell from the beginning. I was nauseous from the second pill, but my mom and I decided to give it a chance.
By the middle of the trial, I was so nauseous and weak that it put my new part-time job into jeopardy. I sat through the orientation trying not to throw up. When I started having heart palpitations to the point where my heart stopped beating long enough for me to panic, we decided to take me off of the drug, but of course, I had to taper down because there was a chance of seizures from suddenly stopping.
Ever since, the problems haven’t stopped. I’m more than a semester behind in college because I’ve had to drop classes. This next semester, I will try for the third time to finish Composition 2 and Intro. to Sociology, and at this point, I’m not sure if I will be able to do it on this try.
I did online classes last semester, and this semester was supposed to be my attempt at real classes again. My anxiety has been right below the surface for weeks. I keep thinking, “If I can’t even make it more than a few days without something happening, how can I make it through classes? How can I live a normal life and have a job when I can barely function for more than a few days?”
I’m very aware of how much my parents spend on my doctor’s appointments and medications – it isn’t a small sum. My mom’s stack of doctor’s bills and reports is easily over six inches. I know my insurance runs out when I hit twenty-five, so I know I have a time limit to finish school and find a job, but I’m going to school to be a high-school English teacher. My starting salary will be somewhere in the mid thirty thousand dollar range.
I don’t want to have to admit that I will have to rely on someone to help take care of me, but honestly, on a teacher’s salary, I will be stuck at home until I pay off all of my student debts or I move in with a boyfriend. I refuse to live with friends because I don’t want them to have to take care of me when I get bad. I don’t want them to have to bring me things when I can’t get up. I don’t want them to have to sit with me when I’m curled up in bed sobbing because I don’t want to be sick anymore.
All I can do is hope that it will go back into remission or I can find a way to manage it because I don’t know how I can ever have a normal life with it as it is. I always have the fear that people are going to leave me because I’m such a mess. I tell my boyfriend that I’m a mess; that I’m falling apart, and he tries to reassure me that the rest of me makes up for it.
It angers me when people don’t take my illness seriously. My sister laughs at me if I tell her why I’m feeling bad. I’ve had people tell me it was all in my head or look suspiciously at me when I can’t give them an adequate explanation of fibromyalgia.
I know I don’t look sick, but I like it that way. If I looked sick every time I felt bad, I’d always look awful. I get mad when I see all this research money being thrown at all these other manageable diseases or anti-ageing products when fibromyalgia has the potential to systematically destroy people’s lives. It doesn’t matter that it’s not deadly: if a disease has a potential to confine you to bed, it deserves funding.
My plans for my future are very tentative. Even if I’m only planning a week in advance, I have to add “I think” to the end of it because I have no idea if I’ll be up to it. I’m sick of having to add “I think” to all of my plans.
I want to have a job. I want to go to school full-time. I to live on my own. I want all of the things people my age complain about. I want these things because they’re normal. I want to know that I can be normal. It hurts to hear people complain about this stuff – I want so badly to do it all.
My political views are becoming more liberal. I’m okay with universal healthcare when we can afford it. I need it. I’d gladly pay extra taxes if it means I don’t have to pay for outrageous doctor bills or ridiculously expensive mediation because I react badly to certain generics.
I support abortion because if I were to accidentally get pregnant, I’d have to choose whether to put my body through excruciating hell and lose all functionality for nine months, or abort. I’m not even fond of the idea of abortion, but I still want that option.
I recently started supporting medical marijuana because my body is being worn down by pain medications. I get upset when people try to oppose me on that one. My favorite argument is that America doesn’t need more high people because people with chronic pain are already high all the time. People in chronic pain take pain pills to function, not to relax. (Also, the people who actually would need medical marijuana hate the people who want to abuse it just as much as you do.) I’d gladly eat a pot brownie instead of taking a pain pill that’ll leave me nauseous and weak for six hours and for half a day afterward because my body is already worn down.
Do I need to repeat that I’m only nineteen?
And all I can do is just sit, wait, swallow some pills, try to exercise when my body lets me, try to eat healthy when my stomach lets me, and hope that I can get everything into a manageable state.
I’m starting to feel it’s too much to hope for it to just go away.
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.
(WINNING)
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:
HypoPARAthyroidism.
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.
Growing old is optional, growing old gracefully even more so.
My mom did not have it easy in the last 5 years of her life. Her first problem was with her sciatic nerve, which first caused pain then weakness in her legs and eventually left her dependence on a wheelchair. I tried to keep in mind that she was in pain, scared and unsure during the times when she seemed to be going the extra mile to be as difficult as possible, but I wasn’t always successful.
After my father passed (Mom went just 4 yrs later), my mother became a shut-in. This was pretty much by choice. We lived 4.5 hrs apart, I’m an only child and we have no relatives who still speak to us living nearby. She refused to consider moving and her house looked liked something you’d see on “Hoarders,” but that’s yet another story. She wanted to live completely independent of help, especially mine, because this was the first time in her life that she was on her own, so I think she wanted to prove to herself that she could.
Did I mention “shut-in?”
She was defiant, she was determined to be independent and she was lying…I had a 74-year old teenager on my hands.
She ordered food through Amway. She bought her clothes via catalogs. She banked via the mail. She had a few friends who would come over and check on her most days, but the situation was far from ideal. Her mind was not the best, but she was sharp enough to lie to me about anything that didn’t show her situation in the best of lights.
For instance, she never told me about the time she fell and had to call the neighbors to help her up. She never told me about the time, in a very confused state, she called 911 in the middle of the night because -best I can piece together- she had a dirty diaper and was having trouble changing it herself. The cops busted the front door open and were not at all pleased to find her in no actual danger.
She did tell me about the time she called 911 for a ride to her doctor’s appointment, only because she felt a grave injustice was being done. Something had happened with her scheduled special needs ride, and she reasoned that if the doctor needed to see her then she needed to take an ambulance. She had received a bill for $700 for that non-emergency ride and didn’t think she should have to pay it. I did talk her into paying the bill, hoping she’d learn her lesson.
I tried mentioning the idea of assisted living, but she wouldn’t hear it.
“They beat you and lock you in your room!” she screamed. Eventually, I convinced her to get some in-home elder care and a woman would come by three times a week for three hours at a time to cook, clean, and run errands for her. Finally, I could get the low-down on her condition from someone who would be honest with me.
This started out well, as Mom enjoyed having someone to talk to and she was now getting fresh, home-cooked meals instead of the packaged crap she ordered via the mail. But, it didn’t last. I got a call from the coordinator to tell me my mom was hitting the workers. She was also being verbally abusive. At one point, Mom chased a worker out of the house, screaming at her from the front door.
I got emails from a friend of Mom’s who had visited her, only to find her crying hysterically, saying “I hate my life!” and hitting herself in the head. When asked about it the next day, Mom acted surprised and said nothing like that had happened.
Then, Mom came down with a bad cold that required someone to stay with her while she was ill. The elder care folks were great and worked out schedules so that she was tended 24/7 until she got better. Problem was, despite appearing to hate these helpers, once Mom got better, she didn’t want the 24/7 visitation to end. In fact, now she was refusing to let them leave. I’d have been fine with the additional help, but we could not afford the $10,000 per month for very long.
I had to talk with Mom and tell her it had to stop. This did not go well, and there were tears, but in the end, she cut back to 1 visitation, 5 days per week.
The pain and weakness in her leg was getting worse, and it was spreading to the other leg. We talked to a number of doctors, but she didn’t like most of them and liked even less what they had to say. Finally, after yet another fall that she still would not admit to, she was in the hospital again. Her doctor convinced her to have back surgery, and at last she agreed. She was hell on wheels both pre- and post-surgery. She had a fear of falling that was off the charts.
When the nurses tried to move her in the bed, or, heaven forbid, try to get her to stand up, she’d scream. I’m talking hear-her-down-the-hallway screaming. I’d leave the room and stand outside biting back tears whenever anyone tried to work with her.
When she was well enough to leave the hospital, she went to a rehab facility to help her get back on her feet as much as possible. It was there that some medical genius, who I’d kiss on the lips today, put her on anti-depressants (yeah, I know, “what took so freakin’ long?!” – she refused them before because she didn’t want to “take dope”). Mom became a bit more reasonable and a little easier to deal with. More like heck-on-wheels. When I asked her why they put her on the happy pills, she said “so I’d stop screaming.”
Hallelujah!
During rehab, her doctor spoke with me, informing me that she could not live on her own. Preaching to the choir, sir. So, through hook, crook and threats of Adult Protective services, I got her to agree to move “temporarily” to an Assisted Living facility near me. I found a really nice place a mile from my home and they assured me that the beatings would be kept to a minimum. (Joke!)
We moved some of her favorite things up and set up her two-room apartment to look really nice and homey. When she got out of the hospital we drove her straight to her new home. Despite hearing how horrible it was, we watched her start to enjoy life again. She was making friends and playing Bingo every day. God forbid you came by during Bingo hours, only did THAT once.
Mom *loved* the call buzzer and actually wore the one by her bed out, because she used it so much. She still managed to keep things lively. I got a call from her one Easter morning, telling me she couldn’t move her leg and perhaps she had had a stroke. “Should I go to the hospital?” Well, the normal answer would be “Hell YES!” but I had learned to ask. “Why didn’t the nurse call the ambulance for you?” I ask. Mom said that they wanted her to check with me first. None of this was adding up, so I told her I’d be right over. When I got there she was wheeling around her room, fully dressed and looking fine. I asked which leg it was that she could not move. “This one!” she said, bouncing the leg up and down.
Her behavior continued to become more erratic, and I got a call that I never thought I’d get. Mom was flashing her boobs at the male help and at some poor, unsuspecting wheelchair repairman. Oy. A doctor was brought in and a diagnosis of dementia was made. This only pissed her off. She accused the facility and the doctor of telling horrible lies about her. “I’d never do that!” she yelled.
In the end it really was a stroke that took her. The weekend of Thanksgiving she had a massive stroke affecting half of her brain. She had her 78th birthday in the hospital, but was not aware enough to know it and she passed just a few days before Christmas.
I’m still working on cleaning out the house, but it is getting close to being done. I avoid driving by the assisted living place, still too many bad memories. I can laugh about Mom flashing the help. It’s two years later and I’m finally getting to the point that I don’t jump when the phone rings.
For the last five years, I’ve been lying to everyone; my parents, my children, social services, but most of all, myself.
My “courtship” with my husband lasted just three months before we became engaged. A year and a month after we met, I married him. I blindly ignored the warnings from my parents, my loved ones, and my own eyes. I thought I could change him. He would be better after the wedding, when all the stress was gone.
How wrong was I?
Within months of our marriage, what I saw scared me, but I decided to stay, thinking, “I can still change him. I can make him better!” I was so arrogant!
We had just conceived our first child when he sprained my arm. I told myself that it was an accident and justified it to everyone else.
His sister assaulted me when I was pregnant. He put me down in front of his parents. His mother assaulted me many times. They told me it was my fault. It was all my fault. Everything was always my fault.
What’s worse is that I genuinely believed them!
They threatened to take my baby away from me if I left. I was so scared of them, I stayed.
Now that WAS my fault! I should have left, but I didn’t!
He raped me the first time when our daughter was just five days old. I can still remember the searing agony that tore through my whole body as he did it! The tears and cuts burning with fire, my screams mingling with those of our daughter who was in the same room as us! That was my fault too apparently. After that, I had to have treatment for an erosion in the womb. That was also entirely my fault.
He was diagnosed with Borderline Personality Disorder. Now he had something else to justify his treatment of me. He “needed” round the clock care, an excuse to stop me from working.
He moved me away from my parents to an isolated town and wouldn’t let me visit them. My parents still blame me for that, as if I had a choice!
After our second child was born, the abuse got worse and worse. I confided in my midwife about him raping me when our daughter was five days old. She and all the other midwives we saw made a point of reminding him that sex wasn’t allowed before my six week check. Normally a woman is signed off by the midwife within days of giving birth. They visited me for over a month to protect me. As soon as my six week check was over, the rape began again. This time almost every night and sometimes while I was asleep.
I haven’t slept for almost two years! I began to crave the oblivion of deep sleep, but I couldn’t because of the fear of what he would do to me while I slept. Twice he raped me anally because I had a period. If he wasn’t doing that, he would say things like, “I was hoping to have sex with you, but I can’t because you’re bleeding,” as if it were somehow my fault for being a woman.
That wasn’t the end of the emotional abuse. There was always shouting and yelling. The police were called. Social services were called twice. He isolated me more and more from our friends and would only let me go out with one of the children at a time.
He’d lock me in the house and “forget” to leave my key behind. Sometimes, he would move my keys, and when I wasn’t looking, would put them somewhere I’d already looked. I thought I was going mad!
When our son was five months old, we went on holiday with his family. While we were there, he dragged me out of the room by my legs in front of our daughter and threw me out into the rain with no shoes and no coat. When he finally let me in half an hour later, I had to sit in my wet clothes feeding our son, while his mother lectured me on how the whole thing was my fault.
A week later, I was rushed into hospital with chest pains. Everyone noticed the bruises and three people made separate calls to social services on my behalf. They sent two police officers out that night to check on the children and me. It was so humiliating! He would never let me speak to men because as far as he was concerned, I was cheating on him with every single man I spoke to.
While I was visiting my parents, he kissed another woman. I wish I’d left him then! But I listened to his sob story about how he was really going to change this time! He did change …for the worse.
In November 2012, his brother assaulted me. I had to go to hospital and was on crutches for six weeks because my sciatic nerve had gone into spasm. I lied in the hospital and said that I’d fallen in the kitchen. I was so scared that my children would be taken from me this time.Do you know how much sex hurts when you have sciatica? Especially when it’s rape.
In May 2013, I was diagnosed with Fibromyalgia. The doctor believes there is a link between Fibromyalgia and Post Traumatic Stress Disorder. That was another excuse to isolate me further from everyone. I wasn’t allowed to do housework because I was “too ill.” I’d given up fighting him. I was so far into my shell, I couldn’t even care for our children.
He slowly crushed me to the point that I didn’t know any different.
We had a visit from our new health visitor. He told her that he was afraid of bathing our daughter because he was afraid of having sexual feelings for her. I was shocked and scared, but I didn’t know what to do! I should have left him there and then, but I couldn’t! I was paralyzed by five years of emotional, financial, and sexual abuse. He’d groomed me for this very eventuality so that I wouldn’t leave him!
The next day a social worker turned up with two police officers who seized all of our computer equipment. They told me that I needed to get the children out of the house. I replied that if they were going, I would be going too. They agreed.
My children have been protected by social services for three months now. I’ve ended the relationship and am seeking help for the abuse. Social services are being as helpful as they can be, but the health visitor thinks I should have left and should not have my children back. She thinks I’m a failure as a mother.
Maybe I am. I should have left. I should have sought help sooner. I have to live with that for the rest of my life. I obviously don’t deserve my children. Obviously love isn’t enough!
I’ve attempted to write this post so many times. And every time, I fail. Either the two small people that inhabit this house are at my feet, refusing to let me write, or words just fail me. This isn’t one of those light-hearted, witty posts where I talk about poop, that you’re all so fond of.
No. This one is about my vagina.
Writing about this has been something I’ve toyed with for a while. Because, unlike my boobs, which the entire internet has probably seen by now, my vagina is a different story. Unless of course it had something to do with my infertility and my making fun of the fact that there’s a line of people waiting to get a look at the goods. DOCTORS, people. It’s not like I’m a slut. Also? I guess a lot of people have seen my vagina. Never mind, then.
After a while I figured, well, if blogging about my experiences can help even one person, then isn’t it worth it to share? I mean, isn’t that what I blog for? Because I like to overshare?
Back when I first had sex, at the tender age of 18 or so, it hurt. Anyone that says that sex doesn’t hurt the first time is a liar. But I had no idea how much it was supposed to hurt, all I knew was that it HURT. A lot. I wondered how women ever went on to have more sex, have babies, or worse, do porn, or make any other sort of living having sex. Because I wanted no part of it.
I tried marching on, like a good little horny soldier should.
But it never got better. I went to the gynecologist. I told her my problems. I winced in pain as she shoved the speculum in my girl parts and fished around with her fist for my ovaries. She never seemed to notice, told me that the pain was all in my head and sent me on my merry way. I should have found another doctor at that point, but I was young and naive. When I went back again the next year complaining of pain, again, she told me it was in my head and to maybe find a good therapist to talk to.
And it was at that point that I didn’t go to the gynecologist for another few years, because her bedside manner was atrocious, and I figured they were all like that. Really there’s nothing fun about getting fisted and then walking around like you have a snail in your pants for the rest of the day, all the while your nether regions feel as if they’re on fire.
Fast forward a couple of years. I was at the hospital waiting for my then soon-to-be niece, to be born. The midwife who was delivering her seemed to have this aura of goodness and light surrounding her. I made a mental note to make an appointment with her, and it was the day that changed my life forever. The midwife’s name was Vivian. And if it seemed that she had an aura of goodness and light surrounding her, it was because she was such a sweet woman. She cared deeply about her job. Her craft. Her patients. We went over my history. I told her about my last doctor, and told her about my problems. She immediately told me that no, my issues were absolutely not at all in my head. She told me that I had a condition. A condition that other people suffered from.
My problem! It had a name! And I wasn’t alone! She told me that she was no expert, but it sounded like I had something called vulvar vestibulitis.
Vestibulitis is basically a condition where the vestibule (or entrance to your vagina) is inflamed, causing stinging and burning and redness to the nerve endings. As I understand it, it’s an excess of nerve endings. The inflammation can range from severe, as in you can’t even wear pants, to mild, where it’s basically aggravated by something being inserted into the vagina such as a penis, or tampon, or a Buick Rivera. Whatever you fancy, I don’t judge. (I guess I still can’t avoid wittiness. Even when I’m trying not to be). Mine ranges on the mild end of the spectrum where it kind of feels like there’s a buick being shoved up my yang when I’m having sex, but otherwise, I can wear pants, sit, and walk if I so choose.
Vivian referred me to one of the best people to deal with this condition. Her name is Susan Kellogg-Spadt, a nurse practitioner (PhD) who is considered a pioneer in the field of pelvic and sexual disorders. I am extremely extremely fortunate that she is based in Philadelphia and that I only have a 40 minute drive to see her. There are people that fly here to see her. I didn’t walk, I ran to see this woman. She made me understand I wasn’t insane. What killed me was that from being on birth control (which I find so funny, after going through fertility treatments for years), I always had a chronic yeast issue.
The stupid asshole gynecologist that told me everything was in my head just threw pills at me, and whenever I went in, she told me, “you don’t have an infection, just have yeast.” And that should have been my second clue to flee from her care. Because of this chronic yeast problem that only temporarily went away with things like Diflucan or some sort of vagina suppository containing foul goo, it was most likely the cause of the condition. When I first went to see her, she started me on an estrogen/atropine combination that I applied topically. I graduated to a capsaicin cream, also applied topically.
Did I mention that not only did she help me, but this woman is all sorts of awesome?
I know I just heard screeching brakes in your brain. Hold up. WHAT? Why on earth are you putting the equivalent of a jalapeño on your vagina?
I know, right? It totally sounds like backwards logic and it kind of is. The first time this was applied by Susan herself, she gave me full on “no bullshit or sugarcoating” warning that it not only was going to hurt but that it was going to hurt like a bitch. And then she proceeded to stand near my head, because she’s obviously not stupid. I would have full on donkey-style, kicked her right in the teeth. But then, once the burning wore off and I stopped swearing, I realized that it calmed the nerves down, and helped with the pain.
It was ten years ago that I sought care from her. And where I’m at now is basically, well, I’m uncomfortable. Sometimes sex is still unbearable, sometimes it’s a lot less painful and I can handle it. The pain has not completely gone away. My next option is surgery. Even though it’s knives coming at my vagina, I’m kind of at the point where I’m ready to take that step to see if it will make my quality of life better. Recovery is very tough from what I’ve heard. No heavy lifting for a really long time. I went for a consult when the Mini was about LG’s age now and I just couldn’t bear not being able to pick him up for that long. Even going through what we were with him at the time, when the doctor told me that I couldn’t lift him up, he got up from where he was playing and climbed in my lap and nuzzled his head under my chin. Even though it seemed as if he was checked out and not paying attention, he knew. And then a few short months later, we found out about matlock baby. And now she refuses to be put down, ever. I’m not ready to put her down yet. This time with her will go fast enough. But I’m ready. I’m just waiting.
Why am I telling you this? Because there are so many women out there with this condition. I thought it was something that was rare. Something I was one of the few that suffered from it. And I’ve learned that I’m not and that it’s not uncommon. People just don’t talk about it. It’s a shame. I don’t go around talking about it like I do developmental delays and Autism. Because that just makes for an awkward introduction. But I do share it with people I’m close to. I guess I’m close to you, internet. I don’t want people to feel afraid or like they’re a freak. It’s so damn common that every time I make an appointment to see Susan, it’s like a three to four month wait. So it’s obvious that it’s a secret hell that so many women are going through. It’s a sad thing. It’s a frustrating thing, especially for your significant other.
But you’re not alone. And if that’s how you feel, then talk to me. Ask me questions. Or tell me what you know. I want to give you a hug. I want to bump fists.
Most of all, I want you to feel like it’s going to be OK.
In 2003, I had my beautiful, gorgeous and sweet baby, 3 weeks early and after 5 days (yes, 5 days) of labour. As you can well imagine, when I got to the hospital (which also happened to be my birthday) I had been in labour for 4 days. I was tired, my blood pressure was going up and it was time to get her out. Physically, she was fine, so there were no worries about my daughter.
My back felt bruised, swollen and unsteady and I had had an epidural with her birth, but I assumed that it would go away. I went back to work ten days later as I worked for myself. Three months later – I still felt unsteady. My spine felt tender and I was getting concerned. I was out for a walk with my 120 pound dog, toddler and infant. My toddler ran out in the street and I went to scoop her up. It felt like I had been shot.
My legs went out and I was in white-hot blinding pain. It took me almost forty-five minutes to get home from my usual five minute walk. I managed to get us into my bedroom, shut the door and call my husband.
That was the beginning.
Since then I have had several occasions when I can’t walk, migraine headaches, insomnia, burning pain, loss of function of my hands and face, numbness, electrical shocks, cramping, shooting pain. Currently, I am technically un-diagnosed and am floating around the system. It is awful, but I have seen and know people who have had worse. I have done numerous different therapies, medications, tests, and seven years later, I have no answers and am still in pain.
Losing some friends and family; it has made me want to create an enhanced awareness about Pain Patients.
We are treated like pariahs, criminals, junkies, nut-jobs and the like. We are misunderstood, misdiagnosed, dismissed, referred-out and judged. Pain is invisible and the human brain will delete the actual physical memory of pain. Pain is different for everyone, making it difficult to relate. What is bad for one is nothing to another.
I want to increase understanding and acceptance from the Medical Profession that we are real people, with real problems, with real pain. The Health Care System needs to be properly educated on Pain Medication, Pain Management and Treatment for pain. So that there is hope out there for us.
We need to be heard and recognized.
Thanks for building this site for all of us Painies!!
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.
