I have a wonderful life. Great husband, great family, and I love my job…it’s not perfect, but it’s good.
Except…
For flippin’ migraines.
Growing up I got one in a blue moon and really, they were bad, but I wasn’t stressed out about them.
I’d just get one and think, “Oh, this sucks. I have a migraine.” And I’d take some medicine, drink some really strong instant tea and it would go away. Later, I’d get them and take a cocktail of Benadryl and ibuprofen to go to sleep and it wouldn’t be a big deal.
Five years ago, I woke up one morning, laid in bed for a little bit with my husband, got up and started to get ready to leave town for my grandmother’s funeral. I bent over to pick something up off the floor, stood up and next thing I know I hear my husband yelling “Jennifer! Jennifer! Open your eyes and look at me! Jennifer!” What the heck? Why? Then I realize I’m in a really weird position.
One doesn’t normally find herself sitting in her laundry basket.
Then I realize I’m still naked. Then I realize I need to throw up. Then I realize the only other time I’ve seen my husband so scared was when I passed out from a fever a couple years before. And can I say that since my step-son’s best friend at the time was one of the EMTs working, I’m really happy my husband didn’t call 911 so he could find me naked in my laundry basket? What does it say about me that I’m more worried about that than the fact that I was unconscious and naked in my laundry basket?
So that set off a round of doctors, emergency rooms, MRIs, CT scans, and heart monitors. And daily migraines. Yep, I said daily migraines. My husband’s thought is that I hit my head against the wall when I passed out, and maybe it knocked something haywire even though my head didn’t hurt and no damage has been found. The best news out of all of this is that I actually have a brain. I have pictures. It’s there. Contrary to some people’s belief I do have more than just empty space between my ears.
So I went 6 months having daily migraines. I was taking a cocktail of medications to manage the pain, because these are not normally the type that are aided by Imitrex or things like that. I had to take an anti-inflammatory, a pain medication, muscle relaxer, and my dear old friend Benadryl to get rid of the pain. And I needed to sleep. I was working in a place that had a lot of chemicals, so after 6 months of working half days we decided that it was best if I found a new job. So I did. And my migraines have dialed down to a couple a week.
I have two kinds of migraines, which is part of my problem.
I have the classic which is where you get the aura and have squiggly lines in your vision and it feels like someone is jabbing an icepick in your brain. Those are rare for me. Then I have my normal ones where it feels like the angel of migraines came with his boxing gloves to punch me in the left eye. It’s always the left side. And either I wake up with it or suddenly I realize, “Oh, hey, I have a migraine”. There’s no warning like the others. And with my normal ones there are three levels of pain. “Oh, hey, my head hurts. Ok.” is the mildest. Then there are the ones like today, “Crap my head hurts, but I can function so here I am, but leave me alone”. And then the worst are the “Oh freakin’ hell, somebody kill me now!”
Recently, I’ve been introduced to a new circle of hell – the DOUBLE migraine. Really?
Because the others weren’t bad enough? This is where I get one aura, my head starts to hurt really bad, then after that aura goes away I get another one about 20 minutes later. Seriously!
The pain from that is excruciating and double.
Along with my own personal pain and agony that goes along with these migraines, I have to deal with other people. Most of my migraines are like today. I look fine. I’m at work. I’m functioning. I’m typing a flippin’ blog for crying out loud. If you’re paying attention, I look like I’m a little off. But to the casual observer I look fine. Something may come up and I’ll say “Oh, I’ve got a migraine.”
But when they’re bad enough I need to call in to work, load up on drugs and sleep all day, I get “but you could work the other day”. Yeah, out of sheer force of will and there was too much I had to do. And then there’s my husband. He’s the only person on the planet I wish would get just one migraine. Just one. I don’t get them just to ruin his plans. I don’t get them because I just want to miss a day of work. I don’t get them to get out of cleaning. There are the granddaughters. God bless them. I hate it the most for them. There are times it is impossible for us to be in the same house when I have a migraine. And unfortunately, they’ve learned to ask “Do you have a headache?” when they come over and something seems off. They still need to be able to be little girls, so I try to tell whoever is responsible for them that they don’t have to be quiet and if they want to come give me a hug it is really okay. But most of all, it’s the people that want to offer me solutions. Like I haven’t tried everything already. And 5 1/2 years later, I have a pretty good idea what causes them, but you just can’t avoid the weather. Although, I kinda like my husband’s ex-mother-in-law’s idea…medicinal marijuana. I really hate being perceived as a whiny-a$$ baby who complains all the time, so I don’t share with many people.
So there’s my migraine rant. I hate them and they hate me. I hate that it inconveniences others.
We spent the weekend away in Seattle, our first real weekend away from Kellen. Although we missed him, it didn’t hurt to have a weekend away from the constant demanding needs of another human. The first night we were out to a nice dinner on the water, and another family came in with a whiny toddler, and I wanted to tell them that I had a No-toddler-within-50-feet-of-earshot rule while on vacation, but that didn’t seem fair! We have certainly caused our share of raucous at restaurants.
Our trip was mostly for my check-up with the Lyme doctor, and we decided to add on a couple days away. This was the view from our hotel room:
We watched cruise ships load and unload passengers as though it were a 24 hour cattle call. We made a mental note that if we ever went on a cruise, we’d arrive late and make sure we could afford to be a VIP.
On Friday, I had a PICC line put in. It’s a more permanent IV line that allows me to give myself daily meds that will hopefully penetrate the blood-brain barrier and kick these spirochetes to the ground. After I had it put in, I told Dan we needed to name it. When Dad was sick with cancer and we were being given a five year life expectancy (it’s been nine years thanks to a great clinical trial), we named his IV stand Freddie. Whenever it was time to walk around 4-south, one hand on the pole, the other closing his hospital gown, it gave us a momentary laugh to call for Freddie, the IV stand. I guess it personalizes medicine a little and makes it less scary or… medical.
Dan decided that we should name it Venus, the intravenous PICC line.
you have threatened to kill me and it seems every time we talk you spew out nothing but lies.
I failed you. As the person who brought you into this world, it was my convoluted job to make you appropriate for society.
If you had been an only child, would it have been different? If you had been an only child, would I have given you more leeway so I did not sacrifice your siblings humiliation, safety and discontent?
We moved for you. It was the area, the neighborhood, the school, the doctors. I did everything and gave all in hope that the problem wasn’t really you.
Doctors, therapists, counselors, hospitals; things a mother should never have to say about her child, I said.
In the end, I failed you.
For many years, I was a mighty warrior set out to ensure your health and happiness, but you broke my spirit and I gave up. I want so badly to let you in, but the price is so high and I am emotionally bankrupt.
You deserved a stronger mother, one who could stay in the fight, one who could be more understanding, one who could battle for more than 19 years. I am so sorry you ended up with me, who tried to make you fit in a cookie-cutter mold. I still have no clue what kind of mom could have helped you.
It wasn’t me.
I battled uphill to mend my broken life while trying to protect yours. The spiraling, all-consuming, soul-sucking, constantly being kicked and punched, that was all beyond me.
I’m sorry I am so broken and weak that I can’t afford to be hurt again. Everyone in your world has disconnected over the years in the simple and often subconscious act of self-preservation. But in everyone’s life, there should be at least one constant, one person you know will always be there. You don’t even have that.
I hurt you.
I insulted you.
I embarrassed you.
I punished you.
I hospitalized you.
I let you down.
I lied to you.
I threatened you.
I had you arrested.
I closed my door to you.
I laughed at you.
I walked away….
I didn’t ever deserve you, and you certainly didn’t deserve me.
This was meant to be a letter to my Mum, but I started rambling. I’m not ready yet.
This is really very hard for me to type, but I have needed to say this for a long time. I tried once to tell you, but I hate seeing people look sad for me or to think that people worry about me, so I tried to make it seem less bad. Since then, I have had a lot of counseling and have given myself a lot of time to get my head around it.
I hate saying this, so I’m only going to mention it once. When I tried to explain what had happened when I was eighteen, I down-played it a lot. What really happened was not a blurring of lines.
I was raped.
I was on a night out and ended up with nowhere to stay. A man saw me alone and started speaking to me. I did not know him well, but I had definitely seen him around before. We have the same circle of friends. He offered me a place to stay, and made it clear that he was just being friendly. I believed him.
We went back to his small studio flat and sat on the sofa talking for a while. I was quite drunk at this point. He kissed me, and I kissed him back. While I wouldn’t have initiated anything, I didn’t indicate that I didn’t want it to happen. Kissing him back was maybe my first mistake. He seemed to take consent for kissing to mean much more. He took me over to his bed, and I let it get too far then. He had removed my clothes before I told him and showed him I wasn’t comfortable with what was happening. He carried on kissing me, and I don’t know why, but I didn’t feel I could speak up again.
I was scared and uncomfortable and eighteen years old. As he went to initiate intercourse, I made it very clear I was not interested, but he continued regardless. I was scared that he might become violent, and I was so out of my depth that I let him continue. After initially struggling hard, I stayed completely still underneath him, letting him rape me because I didn’t know what to do. He DID know I wasn’t okay with it, but I still sometimes feel like it was my fault I didn’t fight him off.
He fell asleep shortly afterwards, and I lay awake in his apartment, in shock. I don’t know why I didn’t leave. I didn’t feel I could. I had nowhere else to go, and I was genuinely completely frozen by what had just happened. I also don’t think the full reality had set in. I was sick multiple times through the night.
The next morning, he acted as though we had just had a one night stand, as if we were both consensual partners, when he knew we weren’t. The worst thing was just before I left, he said, ‘You bled last night, it’s fine don’t be embarrassed,’ as though it was embarrassment I was feeling right then. And then he added, ‘..but do I need to get checked for anything?’ I have never felt more disgusted with myself than I did right then.
I then had to walk home in the previous night’s clothes, make up, and shoes. I felt like I was being silently judged by everyone I walked past. They had no idea how much I wanted to die.
I still hate myself. I still fear sex. I desperately want a relationship. I want to feel loved, but I know the sexual side is expected. I just don’t know how I can do that again.
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.
