State of my Union

Before I jump into the heavy topics I want to give a little life update for you:

Almost three months at the new job and I am still loving every minute. It is an incredible place and I feel like I’ve been there forever. I’m a part of a team there. My opinion and experience count for something and are validated. It is where I need to be and the best career decision I’ve made since I quit grad school. (oh and playing with puppies as needed to relieve stress helps.)

I finally have a car again after almost 5 years without one. FREEDOM!

Healthwise…I continue to struggle a little but the decrease in work stress has minimized my pain levels and Rheum activity but it’s still difficult. I’ve only had 1.5 sick days since I started which is an incredible improvement.My annual bout of SAD is back. Using my UV light, trying to “exercise” a bit, and all the vitamin D can’t save me, so I’m adding another anti-depressant.

Dating is the usual.

I’m trying to be more social and getting out there which is helping.

All in all I can’t really complain, life is good

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YAYAYAYAY!

SINCE LAST NIGHT’S SAD “I HATE MY JOB POST” I’VE BEEN CONTACTED BY NOT ONE BUT TWO RECRUITERS!!

Ok I’ll stop screaming now.

I have a phone interview on Friday and a meet and greet on Monday morning before potentially moving on to the employer.

Today at work, wasn’t great, wasn’t not great, it just was. Blah. My boss makes me physically tense up when she’s near me trying to repress the anger but I digress…

I needed this boost.

I really needed it today to help keep the momentum of this weekend with me. I got to relax and have fun and see a lot of people (well a lot by my standards – mmm #wafflebacon) and having some kind of hope that I may not be stuck in this crappy job much longer is going a long way to ensure that.

***

Unrelated to work things. I walked pretty much all around the Toronto Zoo yesterday (except for the Canadian Domain) and I’m only mildly achy in the feet, knees and hips.

I’m holding on to my happy wherever I find it.

“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.

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.