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.
I had a moment of realization this morning. I don’t KNOW that I have psoriatic arthritis yet. I’m clinging to this diagnosis, yet I haven’t seen my xrays. I haven’t seen the blood tests. Who knows what they say? I know something’s wrong. I know it’s not all in my head. But there are so many things it might be.
Let’s lay out, 100% what we know about me.
1) I have psoriasis. My elbows and feet are flaky, itchy, painful, masses of skin problems. I’ve had psoriasis for as long as I can remember. FOREVER.
2) My hands hurt. My hands hurt every morning when I wake up. It takes an hour of slowly moving my fingers to be able to get up and brush my teeth and hair. To get dressed. Sometimes I can’t handle buttons or zippers at all. Some days my husband has to open doors for me – not because he’s a gentleman, but because I can’t turn the knob on my own. Sad but true: I didn’t quit smoking to be healthier. Or to save money. I quit because I couldn’t consistently use a lighter or matches and holding something so narrow hurt my joints.
3) I have hyper-mobility syndrome. Every joint in my body extends past the normal set-point. This is partially why no one believes how much I hurt… my joints are still moving in the normal range of motion! But, doctor, they used to move MORE. Apparently that’s not enough.
What I know, 100%, is that I hurt. Sometimes a little. Sometimes a lot. Movement is good – to a point. Resting too long makes my joints stiff. I’m finding myself more frequently getting feverish without being sick. In general, my temperature is higher than it used to be. The shapes of my joints are changing. The color of my skin changes with the level of inflammation. When I hurt, my hands swell to twice their size or worse. My fingers look disgusting.
So, what’s wrong with me Doc?
I’m clinging to psoriatic arthritis because even though it’s life-long pain, there are treatments. It could get better. At the very least, it could stop getting worse. That’s all I’m asking for now – that today’s pain is the worst it is going to get.
I have a Bachelor’s Degree in elementary education and a good, stable job. I have amazing friends and family and a husband who loves me. I know all of this. Most days I am incredibly thankful for all of it. Most days. But then, the doubts start creeping in…
Am I where I wanted to be at this point in my life? No.
I was supposed to be happily married with a home and children of my own to raise. Isn’t that what the fairy tales promise?
Instead, I got married young to a man who has this incredible potential but refuses to get off his butt and do something with it. He’s had five jobs in four years, all of them at call centers. Each time he promises it will be better, but 4-6 months in he gets stressed out and apathetic and I’m back to pinching pennies to get by.
And kids? Pffft. Right. Even if, by some miracle, I was able to get pregnant, how am I supposed to raise a child when I married one? I know that I shouldn’t expect him to change who he is to meet my expectations as he is still the same person I married.
But I’m not.
And that, I guess, is the root of the problem. I am not the same person I was two years ago, much less the six we’ve been married or the nine that we’ve been together. But, even as I type this, I feel that I am being disloyal to him somehow. He loves me. He has never abused me, physically or otherwise. I feel guilty and well, to be perfectly honest, I feel like an ungrateful bitch.
I’ve never been on my own. Never had my own space. I’ve always had to answer to or been responsible for someone else. The funny thing is, I chose this. I chose to marry the man who I knew was irresponsible. But, faced with the option of marrying or being alone, I chose marriage.
I settled, I see that now, but not in the way you may be thinking. I don’t mean, “Oh my GAWD what was I THINKING?!?!? I’m so much better than him!” What I mean is, I settled into the idea of being married because I was terrified I would never find anyone else. I was never the pretty, popular girl, with her choice of dates. I was was the overweight, mousy, wallflower trying to blend into the background.
So, when someone actually did pay attention to me, I tended to latch on for dear life.
I settled, and now…now, I don’t know. I used the Almighty Google to try and find someone who knows where I am coming from, but in every post I found there was a paragraph about how the poster had found someone better than his/her significant other. That’s not the case with me. The choice isn’t between my marriage and someone new.
Ultimately, the choice is between my marriage and myself.
I don’t even know if any of this is making sense, or if I sound like a blathering idiot…
I used to work as a planning engineer at a big construction company. I am a pure vegetarian. I didn’t like the non-vegegarian food near me, so I used to stay away from all the people who used to eat non-veg food. We all stayed in a company provided guest house, and they were the majority.
My roommate there tortured me physically where we were staying, and mentally at our workplace, on a daily basis. Since I was inexperienced and rather new to the industry, he used to bully me and downgrade me by calling me a clerk even though I was a Senior Engineer there. I wanted to report the physical torture to my superiors, but my roommate threatened that he would have people torture my family if I did.
In the same office I fell in love with a girl I worked with. I told her that I was being bullied, but she thought I was joking. My roommate’s bullying caused me to leave my job and kept me from having a healthy relationship with the girl I loved. He was telling her bad things about me, and I didn’t want to tell her everything he had been doing to me. I had thoughts of committing suicide and sometimes I even thought about killing him. These thoughts would run over and over in my dreams like nightmares.
Because of him, I am depressed, I lost my job, and I lost the girl I love. I want to report him to the police. I want to kill myself. I can’t sleep from all the nightmares. I don’t know who to talk to because I am afraid and embarrassed. Please help me if you have been through something like this.
Lyme Disease treatment options are all over the place – no one can seem to stick to any standard.
This is her frustration:
I am sitting at the ER. I have had a headache since Thursday with pain behind my eyes. It feels like my skull is trying to break through my eyes and nose and ears. I wish it were sinus related. But it’s not.
The reason I’m at the ER is two-fold. I want to make sure that I don’t have spinal fluid building up in my head. The second reason is more complicated. I was hoping maybe I could switch back to being treated here by my neurologist, who is covered by insurance. My Lyme doctor isn’t. She wanted to treat me with IV antibiotics. My Lyme doc thinks that orals are the first line treatment.
You see, Lyme disease is rife with controversy. Does it exist in the numbers that the International Lyme Disease Association says? Are the current tests sensitive enough for diagnosis? Does Lyme seroconvert in the blood like other infectious diseases? Is it easily treatable? Will three weeks (and maybe six weeks) of oral doxycycline treat all forms of Lyme, even if it’s late stage, which mine is? Will four weeks of IV rocephin treat neurologic Lyme?
I have Lyme, but my diagnosis is still suspect.
When I saw my neurologist in September, part of my Lyme test was positive, the other negative. When I went back for blood work,the negative part was now positive. But the positive was negative. Confused? My neurologist wasn’t convinced that I have active Lyme disease though I am symptomatic, and my tests prove that I have been exposed to Lyme (and my first test indicated active Lyme).
So I went to Seattle. I tried Levaquin, but it can cause joint inflammation, so any sign of joint pain and they stop treatment (joint pain is common in Lyme). Then I was put on Rifampin, which I have stayed on for months. It treats a secondary infection that is thought to occur often with Lyme disease. It resolved the shooting electric pains in my arms. I was put on Amoxicillin, which I’ve been on for months as well. Then I tried Minocycline for Lyme. It caused me to walk sideways. I already was dizzy. I didn’t need to have sea-sick vertigo as well. Then I tried Biaxin. I broke out in hives. I tried Doxy. It caused heartburn that radiated to the base of my skull. But the doxy DID work. I switched to Zithromax, and all of my symptoms returned. So I’m back on Doxy and taking Nexium to combat the heartburn. The problem is I’m not getting better like I did before.
What’s next? IV drugs. Insurance will pay for one month. It often takes more. A PICC line. Daily infusion. I was hoping to get treated from someone locally. But it looks like the doctors here don’t want to touch this. When I get home, I will call my doctor in Seattle and wait. And if this doesn’t work, I am flying to the Northeast where this stuff is treated often and where it costs a lot of money to see the top docs.
I am ready to be healthy. Six months with little improvement is just not acceptable to me.
