“Sunday night” Anxiety

Canada day followed by a vacation day means Wednesday is my Monday and as such I’m falling into my pattern of “Sunday night” anxiety.

Every Sunday, after struggling through my injection side effects, I feel the anxiety creep in. Work in the morning. Nothing is scary these days.

I don’t worry about losing my job, I’m certain my boss is aware I will try to take her and the company down if there was even a hint my job was in danger. That said, I am so unhappy there, so stressed (because of the treatment I received not the workload). I barely stretch myself anymore. I’m putting in what I need to to get by and that’s all I can do. That makes me miserable.

This state of perpetual stress makes me feel unwell. It exacerbates my rheumatoid disease and my depressive symptoms. It’s such an unhealthy environment for me I need to get out. I count the minutes when I’m at work. The seconds sometimes and I bolt at 4 PM on the nose everyday because I do not owe my boss or that company any more of my time than I’m required to work.

Friday I was made to watch a video about psychological standards in the workplace. My boss furiously nodding in agreement with things when all I wanted to say was, “do you see how this was like my situation at all?!?” I truly believe she’s oblivious, which sent my blood pressure through the roof as I listened to the webinar.

An acquaintance was telling me about all the accommodations her company just offered to her and to say I’m envious would be an understatement. After everything I’ve been through this past year wrestling with the stress of work on top of everything else has probably shaved a good five years off my life.

So to help myself I sent out 3 more resumes last week. If I get an interview I know I could make an impression. So keep your fingers crossed.

Lifestyle Drug My Ass!

When this article in the Atlantic popped up on my timeline I favourited it to read at a later time. I wasn’t in the mood for it. Well after I finally got around to reading it, I was definitely “in a mood” – a pissed off, want to slap someone mood (even if that would mean an achy hand a wrist for some time).

Please take a moment to read the drivel that was published so you’ll understand where I’m coming from.

Where to begin?

The Dr. Frankenstein references?

Calling biologics “lifestyle” drugs?

Waxing poetic about Phil Mickelson?

Enbrel worked a bit for me but I’ve moved on to Cimizia, yet another biologic. It is not a lifestyle drug, it is a life saving drug.

I don’t think I’ve ever given a second thought to the Chinese hamster ovary cells when I’m injecting my drugs. To be honest with you when you are in the level of pain people needing these medications are in, I’m not sure we’d care what it’s made of if it works. Maybe that’s just me. Is it Frankenstein-ish? Maybe but no more to me than most other drugs or modified food or preservatives or a million other things I’m in contact with every day.

I’d love to invite the author to hang out in my bathroom on Saturday nights when I do my injections. There isn’t a damn thing stylish about syringes, alcohol swabs, band-aids and tears every week. Sitting on the edge of my bathtub trying to get through 3 shots. It hurts. It’s a lonely process. And it’s a scary process. I know what I’m injecting into my body: chemo and engineered proteins. I have read all of the possible side effects – the list ends in death in case you were wondering – but when I’m sitting on the edge of the tub I *can’t* think about those things. If I did, there’s no way I’d every be able to inject myself. Instead I think, hope, wish that with every shot, I’ll get a bit more of my life back. More energy, less pain, less inflammation, more normalcy.

“Many of the most profitable biologics are indicated to prolong life for cancer patients, but Enbrel is a lifestyle drug: it is meant to enhance life rather than extend it.”

Can we call it a lifestyle drug if it just gives you back normal function? I have no doubt that biologics will also be extending my life where other treatments may not have been as effective. A year in and already I have to worry about my heart. I had my first echo in January but thankfully, no inflammation of my heart, just my ribs.

Biologics aren’t optional for my condition. Rheumatoid disease came on quickly and even with biologic use it continues to affect me and ravage my body. These drugs just slow down the process and give me a chance to live.

As a Canadian with no cable I wasn’t even aware until I first researched Enbrel last summer that Mickelson was a spokesperson for the drug. Bless government regulation that keeps that nonsense from happening here. Looking at the differences in the Canadian and US websites for biologics, the level or marketing and style is completely different. Sad but true. US sites tend to be flashier, glamorized while the Canadian ones are more toned down. Either way, the issue of money comes up when biologics are needed.

I still remember when my rheumatologist mentioned them and their approximately 20,000$ per year price tag. I cried a lot when I got home. Even with insurance I’d have a 20% copay. No way I could afford that. Thankfully, as horrible as pharmaceutical companies can often be, Enbrel and Cimizia both helped to subsidize or completely pay for what my insurance doesn’t cover. Plus patient support, nurses available 24/7 to take calls, providing you with sharps containers and other essentials for injections. I’m lucky. So many people who need these drugs don’t have access to them due to money or lack of healthcare or just poor healthcare.

Call biologics whatever you’d like but I doubt there is an actual patient who takes them that agrees with the characterization in the article. I just wish publications wouldn’t print such absolute crap.

In Four Dates Or Less

One of these days I’ll figure out this dating thing but that time was not over the last three weeks – sadly.

I met someone online like one does these days. Not expecting anything but being pleasantly surprised after our first afternoon of sausages, dirty duck fat fries and a movie. He was funny in an off beat way; polite; gentlemanly; and all the things a girl can hope for the first time she meets a guy. Later that evening both of us revealed we’d wanted to extend that first date but didn’t really know how. Good start.

Daily texts and an invite later I found myself at a church (if you know me, that says something. No it was not a service let’s not get crazy!) but I got to see a side of him that I’d heard about but has to be seen to truly understand the passion he has for it. Drinks with some of his friends afterwards then the fateful goodnight. Screwed that up. No kiss. I wanted to be kissed and he wanted to kiss me but apparently once again we couldn’t make that happen. Mixed signals.

On our do over the next night we had a kinda forced kiss right outside my apartment. I never told him but he looks pretty damn sexy in his motorcycle jacket and glasses. It got better as the night went on. Private jokes were made. Silly conversations were had and really good sex.

Then last Friday we had our best and last date. Full of lust, and dinner, and a nice walk by the river. Dare I say it might even been a tad bit romantic even if we were having some absurd conversations and threatening to throw to throw each other in the water (ok I threatened him). The night ended and I went to sleep with a thoroughly satisfied look on my face. Woke up the same way.

A few quick texts in the morning and on with our respective days.

I spent the day with The Film Guy having brunch, discussing the mess that is his life and watching the worst Brendan Fraser movie ever made. Truly. As I was leaving I checked my phone and there were a few texts about the previous night and then he asked if he it was alright if he went on a date with someone else.

Have you ever had the wind knocked out of you? I have so I can attest that’s pretty much like what reading that text felt like.

Backing up to when we’d started dating we’d talked about dating other people. I’d agreed it was fine. I’d actually been thinking all day how I wanted to talk to him about maybe taking other people off the table but I never brought it up and now here was that text. Slapping me in the face.

What happened next is what not to do when two stubborn people with different emotional baggage (me with abandonment and trust issues and him with emotional commitment issues) run into a problem. Passive-aggressiveness is never the way to go and yet the two of us were backed into our corners taking swings.

I said let’s end it and go on the date – after all you can’t hurt me if we aren’t together (though I was already hurt). Then as he said I kept trying to negotiate back from there. The last thing I really wanted to do was break up with him but I got scared and all defences went up and that’s how I reacted. I think we both thought we were trying to talk it out but I swear everything I said or didn’t say made it worse. I told some ugly truths about myself, which he construed as me trying to explain away all the issues he had with me and what I’d done. We tried that for two days and then he said he just couldn’t. We shouldn’t date he said and that was mostly that.

It came down to him believing that I would never trust him – he has a busy schedule, etc. – and that somehow I’d be crazy about this thinking he’s always with someone else. Now I won’t pretend I don’t get jealous – we all do – but I have never kept tabs on anyone that I’ve dated or slept with. I’ve never been that girl. Don’t want to be her and if someone made me feel like I had to LoJack them I probably need to break up with them. The other issue as he saw it was that he couldn’t trust what I was saying. After all I’d changed what I wanted from our relationship in the space of a week.

I couldn’t/can’t see his issues as things we couldn’t get past if we’d wanted to but the way we beat each other up for two days took a lot of the shiny niceness away from what I thought we had. And I guess ultimately when he said he was already looking elsewhere so what chance did we have…that was pretty much the nail in that coffin.

So I’ve learned that I can end a relationship in four dates or less.

Four dates is now the record I have to break with my next relationship.

Always err on the side of caution because you never know if you’re going to really like someone in a week. Better to seem kinda clingy and insecure from the get go than leave the possibility open because that ladies and gentlemen will come to bite you in the ass.

I realize there were a few mistakes I made, some that were thrown at me in our two day text war, but some that I just realized on my own and it made me wonder how do people ever get dating right? I mean really? Is it easier if it’s the right person? Is there some secret that no one has shared with me? At this point I’ll pay for dating lessons.

I’m far from perfect. I come with a European travel set full of baggage. I think I have a handle on most of it but there are some things, some actions and reactions that just bring out every single fear I have and send up all defences.

I ain’t even mad – I’m more disappointed. I don’t really like people all that often and things never should ended up the way they did. C’est la vie I guess.

Les Liaisons dangereuses revisited

If you’ve followed me here from my previous blog none of this will seem remotely shocking. Actually it just seems like I’ve come full circle at this point (or at least I’m attempting to).

I’ve had all kinds of sex: loving sex, angry sex, breakup sex, make up sex, kinky sex, etc. for the last two years sex has been…I don’t know…tentative…reserved…safe. (That is not a criticism nor meant to disparage any of the lovers I’ve had. Bless them all they got me through an extremely difficult period sexually and I am grateful).

As time goes on I’m learning I can trust people with my body again. I still need time but I can let go again. Enjoy myself again – literally.

One little thing that happened recently while having sex unleashed a lot of desires I thought had long since been been extinguished – being bitten. When you’re with a partner who actually enjoys biting well that’s something completely different than someone who does it because you’ve requested it.

The first time there were nibbles or nips that were more that little love bites so as we were laying there afterwards I teased him about being a biter. I confessed nothing, certainly not my intense love of being bitten. Though I later shared something I’d written about an extremely intense biting experience from a few years ago. I still have evidence of our second encounter, one of the perks of the experience, a lasting reminder.

The rush that comes with biting, the arousal, the pain, the intensity, all of those things came rushing back and I wanted more. Not just biting but those things that I used to enjoy or that I was starting to enjoy when everything changed.

I have an entire box full of toys that have been gathering dust for about two years now. Some actually require a partner to use but I haven’t really been into allowing them out of their hiding spot.

I truly thought some of my darker desires would never come back. I thought that I’d never want those things again that it wasn’t safe to want them. Just before I was raped we’d been talking about toys and experimenting and dabbling in dominance and submission. I don’t think I realized until recently how that conversation and what followed killed all of those urges instantly and made them terrifying to me.

I’ve never been a “everything happens for a reason” person but I think stumbling onto someone who had that particular kink at this particular time is just what I needed. One step closer to reclaiming all of my sexuality. Piece by piece.

Fat Girl at the Gym

I’ve put on another ten pounds in the last year, at least 5 of those in my breasts, but that’s in addition to the extra weight I’ve been carrying around the last almost 10 years since my run in with the anti-depressant Remeron.

Some days I think fuck anyone who judges my weight. I try to carry myself well and dress in a way that flatters my shape and size. And sometimes I just plain don’t care – I happily wear my form-fitting sweater dress with horizontal stripes. I try not to think about how people look at me and my weight.
That said, I know I need to lose weight to help my joints. Losing 10 pounds reduces the amount of pressure on your joints by 40 pounds of pressure. With the way that my feet, ankles, knees and hips are feeling these days, it’s the least I can do for them.

Between not feeling great and worrying about pushing myself too much and using up my energy I’ve not been doing too much physical activity. I sometimes need to rest after a shower or washing the dishes or taking my laundry downstairs…this is life with Rheum.

I have a free gym membership to Goodlife through my job. I wish I used it more. I want to use it more. I need to use it more. I asked for a Wii Fit for my birthday to avoid the gym – that didn’t really work either.

Going to the gym brings out all my fat girl, self-conscious, not good enough issues. From the moment I step into the gym I feel like I don’t belong. I don’t have the right shape, the right clothes and I’m not even remotely “healthy” enough.

I know that many women like women’s only clubs – I hate them. Men at the gym don’t intimidate me or make me feel inadequate, it’s the women beside me on the elliptical who aren’t even breaking a sweat in their tiny Lululemon ensembles, who look like they fell off a magazine cover that make me want to run and hide. (As an aside who makes non “compression” yoga pants these days? My go-to used to be Old Navy but I don’t need my rolls squished when I’m already feeling uncomfortable thanks)

In my mind that woman and every other one is watching me, judging me as I plod along for 20 minutes, sweating, red-faced and puffing for air.

I try to cover up as much as possible at the gym. A form fitting tank to wick away sweat and smooth out the lumpy parts, with a baggy t-shirt over top and yoga pants.

I feel awkward.

I feel like a fat girl. I know the only way to lose weight is to get moving and the gym will help but I hate subjecting myself to that over and over again.

I went to a few Bodyflow classes with coworkers – it was still intimidating. Seeing those women who clearly attend all the time, who bend, and move and look graceful. Then there was me – modified movements, dripping sweat, watching how my rolls squished around in the mirror. It was humiliating in my head. The only time I managed to quell the nagging voice I’m my head was when I finally laid down and closed my eyes, thankful I was still alive.

I see people running outside and I get mad with myself. When I could have done that I didn’t. When I had the chance to get in better shape before my health was taken from me I never used it. I made excuses. I procrastinated. Tomorrow I’ll go to the gym and then tomorrow never came.

People who have seemingly endless energy and physical abilities make me envious (Yes people who constantly log all their gym/athletics are mildly annoying) but I wish I had a quarter of that ability. Truly.

So I start over. Slowly. Trying to remind myself that I am doing this for myself so other people and any judgement they might have can bite my fat ass! The biggest judgements are my own. I know this. I’m hoping that I can keep my self-conscious fat girl voice quiet when I hit the gym this week.

All the Things

Flippant comments can some times unleash a whole pile of emotions the speaker could never intend. No fault of anyone really but when you’re the one piled under the emotions it’s hard to get perspective.

I would love to travel. Anywhere. Everywhere. It seems like everyone around me is going somewhere. Visiting friends. Visiting family. Sightseeing. You name it.

I admit to envy. A lot of envy.

I have my two weeks of vacation but I’m hesitant to actually use it in case I need time off to interview or if I’m lucky enough to actually quit this year it will be carved out of my last pay which at this point I can ill afford.

Travelling is a luxury some people take for granted. I’d love to book a trip to Paris but on top of the money I don’t have because my health expenses suck up a lot of my formerly disposable income, there’s my health. I worry about taking a trip or being away from my apartment too long. Everything I need in case of a flare is here: drugs, heating pads, ice packs, my bed. Sure most of those things exist anywhere I want to go but there’s more. What if I don’t have the energy to do the things I want to? Or see the places or people I want to see? What if I’m having a flare and people don’t understand? What if I get hurt while I’m away? All of these questions keep me close to home.

Last year The Gay BF and I went to Boston for 4 days and that’s as far as I’ve been since I’ve been diagnosed and I almost didn’t want to go. I was scared to be away from my comfort zone. I was scared I’d just be a drag. (And even though he’ll never admit it I don’t think daily naps where *really* what he wanted to do every day).

So real travel plans are on hold for me right now. I just can’t bring myself to go.

***

I saw the light at the end of the tunnel. I interviewed and was offered another job. I had practically moved back home and reinvented my life when I got the call – the company had changed their mind about what they were looking for. Completely unrelated to me or my references.

I actually wailed on my floor that night. Just lost it. I thought I had a way out of my horrible job situation and then pouf! Gone. Back to the shit at my job.

Thankfully, I know now that my interview skills are spot on and that I’m worth at least another 8k than what I’m making now. Tangible proof to all the ranting I’ve been doing about being undervalued isn’t just hot air.

***

I switched to Cimzia almost five weeks ago now. I’ve had the first two loading doses as well as continuting with my 1CC of methotrexate. Except for loss of appetite I’ve had no negative side effects. More importantly, I have energy. Lots of energy. I’ve been social and I’ve been cleaning (scary stuff). Yes, I’ve overdone it a few time and paid for it a little but all in all this is a huge improvement. Pain levels are mild to moderate – made worse by either over doing it or the wacky Southern Ontario weather. Otherwise I have almost pain free days.

Let me repeat this:
ALMOST PAIN FREE DAYS!!!!

***

I’m also not going to kiss and tell but I am dating again. That feels good too 🙂

Rheum and The Single Girl – Sex

I haven’t dated much since my diagnosis but I have had sex a handful of times.

For me, rheum got my hands first. Not uncommon but when you’re dealing with swollen hands I guarantee you that one of the last thoughts you have is about how they will affect sex or your ability to pleasure yourself.

Like most health issues you focus your efforts and energies to getting a diagnosis, a treatment plan and hopefully getting well. Sex, depending on the severity of the illness may or may not factor in but when you are dealing with a chronic illness, well sooner or later sex does become a factor.

The truth is, in a lot of ways, I don’t feel or see myself as a sexual being anymore. It’s hard to when you’re being poked and prodded by doctors, pumped full of drugs with side effects like nausea, and your physical appearance shifts – swollen hands and feet, weight gain, and moonface. There is nothing sexy about any of that. Even worse, you might have sexual desire even for a moment but the pain and discomfort outweigh the value of pursuing the pleasure.

Manual masturbation isn’t even a consideration for me anymore. Even when pain levels are low, the dexterity and repetitive motion required becomes painful and causes hand cramps, wrist pain, elbow pain and shoulder pain. So toys. I’ve been a fan of them for years but now they are a necessity and not an addition to my sexual relationship to myself. It’s odd that for the first time, I view having to use my vibrator as distancing me from my sexual self.

In the last year, I haven’t had an orgasm that wasn’t accompanied by pain (and not the good kind either).

Sex = pain/discomfort

That equation is part of the reason I lack desire or pursue sex. Why would I want to do something that will knowingly cost me a pain-free day or three?

I was having sex for the first time after my diagnosis and my partner reached up and grabbed my wrists to hold me down – I yelped and the mood was broken because all I could feel was the pain in my wrists. I don’t blame him. It was something he’d done dozens of times before…it just isn’t comfortable anymore.

The second time I was ill prepared for just how much of my body was truly affected by my disease. I had taken extra pain medication in the hopes it would dull the pain. It did, ever so slightly. The truth was, I cut things off quickly because my body just couldn’t handle it. More pain than pleasure. For almost a week after that experience everything ached: shoulders, wrists, hands, hips, knees, etc…if I had a joint, it probably hurt. Again, my partner wasn’t aggressive and when I asked to change things up we did but my body wasn’t up for it.

But.

When the dust settles, when I’m having good days in a row, when constant pain and anxiety about this illness of mine subsides I want what any woman or man would want: intimacy, sex, and plain old human contact.

So there’s the constant struggle – what my body needs and what my body can handle.

As a single girl there are times when I just wish I had someone to snuggle or be close to without necessarily having sex. It’s kind of an odd situation to say to a partner you’re not in a relationship with or even really dating, “Hey wanna hang out and watch a movie together while I ice or heat various joints?” So instead I spend a lot of nights alone heating and icing while snuggling my duvet or my body pillow I jokingly nicknamed Lloyd.

I’m lucky, The Film Guy knows about my Rheum and my limitations and the last time we saw each other was just after my birthday so I got what I wanted. A lovely evening in Toronto – dinner, lots of snuggling while we watched a movie and then sex! It was the best sex I’ve had in a year for no other reason than I was able to participate in a much for active way than I had previously. My brief time on Avara allowed to me to have almost pain-free sex!

I bought a book on sex and disability last summer but it wasn’t what I wanted. I tried the Arthritis Society of Canada. Nope. What I wanted we’re suggestions to help minimize pain and discomfort during sex. Show me. Give me examples. I like to read to understand all aspects of life and this is no different. The only resource that gave me, what I consider practical advice was the Arthritis Research UK site. If you have arthritis, I think it’s a brilliant site no matter where you live.

It seems like the major arthritis societies shy away from talking about sex. And if they do mention it, it’s in the context of a relationship and the advice is seek counselling. Don’t get me wrong that’s great advice but it doesn’t apply to everyone and certainly not this single girl.

Rheum and the Single Girl – Dating

I’m the first to admit that my dating calendar has always been sparse. It’s not like having Rheum ground my full social calendar to a halt but it has definitely changed how I approach dating.

First, I have limited energy and good days. I do not want to waste them on someone who isn’t worth it.

Online dating is a minefield.

A horrible sad depressing minefield.

I’m 34 and as was mentioned to me on twitter the other day, to be my age and not previously married and childless is kind of unusual.

So my dating pool, ages 30-45, is full of recently divorced men, some with more than one kid. Or it’s the rare man who is finally looking to settle down and have kids with someone. I have problems with both groups but the ones who want kids…I don’t even bother.

I can’t anymore. Kids aren’t in my future. It’s so odd because last summer I talked to my doctor about having my tubes tied. I was sure then. I’m sure now but when I was told that a recent medication meant no kids for years it still felt like a loss…I digress…dating.

Having Rheum means I bring certain baggage to the table from the get go. Dating brings a lot of those big life issues to the fore. Is it fair to engage with someone who wants kids knowing that I can’t have them and that even adoption isn’t reasonable for me with my health issues? Do I bother with the guy who seems compatible but loves to go hiking every weekend?

This past summer I went on two dates with two different men back to back. The British Guy was more my “type” older, uninterested in kids, divorced, living and loving his job. The Awkward Boy, poor thing, a little younger, too obsessed with his suped up car, and so socially awkward that I bailed after 45 minutes. He couldn’t even talk about his job, in HR to me, common ground!

If I’m going to meet someone – I would like it to be a “real” date. I understand that in recent years (I’ve done this too) the dating world has been reduced to meeting for coffee or a drink or hanging out but if I’m going to take the energy to get dolled up I hope it’s not *just* for a drink. I have issues with the “hang out” attitude that younger guys I’ve engaged with seem hell-bent on clinging to.

(Call me old fashioned or a bad feminist but there are just certain things I appreciate when dating. I like when the man asks me out – picks a date and a time. It doesn’t have to be fancy or elaborate I’m not a high maintence woman but first impressions count. I will always offer pay my share but I like when a man picks up the cheque the first time. I will certainly return that favour if we have a second date but again first impressions. I will just make an observation: all the men I’ve ever dated over 40 have, without hesitation, paid for first dates. I also make it a rule if said first date has tanked and there is no hope for number two to pay my own way.)

Texting me to say lets meet up to hang out in 20 minutes does not work. I may very well be sitting at home doing nothing but that doesn’t mean I have the energy to spring up to go be social. One guy, I’ll call him Lawyer Guy, got annoyed when I kept putting off his spontaneous hang-outs. I didn’t tell him I had Rheum, we hadn’t met yet. I even suggested that we make plans to meet on a certain day, to give me time to plan my energy around that…he wasn’t into it. He kept persisting and finally I said, “I can’t go out with you tonight I’m going to inject myself with chemo, take some pain meds and go to sleep.” He got the message but we didn’t speak after that.

So when do I disclose my illness when it sometimes impedes even the earliest interactions with someone?

I have a friends with benefits, The Film Guy. We starting chatting last summer and met for the first time in August. We actually talked on the phone for over a month before we met because he was on location shooting (yes, he legitimately works I’m film). He was the first sex I’d had in *months* and the first person I’d slept with who was new to me after I’d been raped (yes that adds a whole other layer of caution and skepticism around dating and sex for me). So all of this was discussed the rheum, the rape, everything before we were even face to face. He was understanding and sweet and weird and kinda twisted. It works for us. When he’s in town we go out on dates – he took me out for a special birthday dinner last month before we got down to dirtiness. Our relationship is limited because of his circumstance. He’s not in a place for a steady relationship and that’s ok because we’re clear on our boundaries.

So I have some dating in my life but I want to find something more permanent but who wants to take me and my baggage on? Some times I think it would be unfair to ask anyone to love me because of the depression and the rheum, life is hard enough as it is when people are healthy.
I want to believe someone will think I’m worth it and won’t mind sleeping in a bed with a heated mattress pad, the pill cases, the need to rest after walking around the mall, the expense, being childless…

I know that I have a lot to offer the right man but I feel like Rheum limits my appeal in the dating world. The average dater has a fair bit of self-consciousness to begin with but this feels like a whole other layer…so I date less. I put myself out there less. I feel like I deserve it less.

I’ve been single awhile – it can be awesome – but I want a relationship. I’ve been good company to myself for the better part of 10 years now (yes there were relationships in there just none of them lasting or necessarily good for me). That’s enough. I want an emotionally healthy, reciprocal relationship – that starts with dating, in the minefield.

Rheum and the Single Girl

I’ve lived on my own since 2007. Before that there were roommates, a common-law spouse, and of course family.

I’m an introvert. There is a part of me that likes to be alone. A part of me that needs to be alone to recharge, refocus, and to just be. Even when I live with others, there are times when I need to close my door, lie down and read or listen to music, etc, alone.

I’m a pretty tough cookie but trying to navigate my way through my diagnosis, treatment and day to day living, sometimes I don’t want to be alone anymore.

Sometimes I wish I could come home to someone who could be here to help support me. To help share some of this burden with me. To help me enjoy life. To help me remember when I’m stuck in my bed that there is more than just this body I’m trapped in. To help clean up around here. To hold me when I’m having a bad day.

That’s the chronically ill part of me – in some ways I think that part is selfish. How could I ask someone to share what’s been given to me? Who would volunteer knowing there will be many bad days ahead; knowing that my health is costly; that my body is limited; that there will never be kids or grandkids though I welcome a puppy…

The 34 year old woman in me wants a partner for all the reasons anyone wants one: love, happiness, mutual growth and understanding, respect, comfort, desire, sex…I want a relationship. I want someone to ask me out on a date – not simply as a preamble to sex – but as a way to get to know me. I want someone to hold my hand (but not to squeeze it too hard). I want forehead kisses and couch snuggles. I miss all of those things tremendously.

My depression and rheum-riddled body notwithstanding I think (some days when I catch myself in the right mood) that anyone would be lucky to have me. The me without the two things I can’t divorce myself from – my mind and my body. What a catch!

This is sort of my beginning post on relationships, dating, sex and rheum. I feel like so many bloggers and even resources for rheum patients talk about those things if you’re already in a relationship and how to handle the difficulties that arise but what if you’re still looking? How do you navigate things then?

I have no answers, only ramblings and my own feelings on the subject.

Selfish* condescending and unapproachable, that’s me!

Those are not words I feel as an HR professional should be written on an evaluation, and yet I’m staring at them on mine.

They were accompanied by a book on emotional intelligence.

I do not lack emotional intelligence. I lack giving a fuck. There is a big difference.

I am half inclined to just be more condescending, sarcastic and unapproachable because at this point getting fired would actually be a wonderful thing. Hell I’d quit if I could!

The gist of my appraisal is this: you’re a great employees but you’re sick and that’s too much for us to deal with so get better. If you get better we’ll let you do all kinds of things. Oh and we won’t accommodate you to let you work from home because a lawyer said not to but it’s your fault people have to pick up your slack.

Oh and apparently my coworkers offered feedback about me – I didn’t realize that was an option. I’m tempted to make lists and post them for everyone to read maybe suggest a few of them grow up and act like adults instead of telling my boss.

I am trying to vent all my hostility and anger so I can walk into work on Monday and not cut anyone. I am trying to vent all of this hurt and ager and frustration because I’ve had a headache for 24 hours not that Tylenol 3s, wine, coffee, water, sleep and a orgasm or two have no been able to shake. I am trying to get this all out because I cannot for the life of me figure out how the fuck I got here.

No one of the coworkers I work closely ever asks how I really am. The one person who does, is like my work mom. She checks in if I’ve missed a day, she actually wants to hear my answer if I say I’m not doing well…none of my immediate coworkers ever ask if I’m well. How I’m really feeling. How am I handling things. Do I need anything? But no, I’m the one who needs to put on a happy face and make everyone else think I’m warm and fuzzy. You know when it takes me 1.5 hours to get out of bed because I’m exhausted and I need to stretch just to be able to waddle to the bathroom in the morning, I’m not the most chipper. I try but I am in pain. I am always running on empty.

Instead of anyone trying to help me, I get piled on for not being able to be “reliable”. The ways in which that actually tears me up….

So I need to go to work on Monday, pretend that I’m happy about this shit that’s been dumped in my lap and smile.

Welcome to HR.

*sorry in my rage-writing earlier, I misquoted – I am “sarcastic, condescending and unapproachable”. I apologize for my earlier mistake. Selfish is implied by the way I put everyone else out.