Pain!

(I wrote this the other night)

It’s the night before my pain management appointment and surprise – I’m in pain.

It was “easy” to make the decision to take Methotrexate (chemotherapy) for my #rheum, hell once it was not a financial concern it was also easy to inject myself with Enbrel and then Cimzia (made from synthesized mouse protein). If they were going to keep me from becoming disabled before 40, I was in!

So far no damage that’s visible on X-Rays and pretty normal blood work all things considered.

I go into my rheumatologist and say, my neck is hurting and crunching and causing me pain. Ok, go for an X-ray – nothing visible – it’s not a problem.

Me: Really? My head feeling too heavy for my neck? That’s not an issue? Ok. The crunching? You’re sure the crunching isn’t a problem? And the pain, including headaches….no, nothing?…alright…

Repeat with feet, shoulder, wrists, knees, chest…etc.

My labs are almost normal and yet – not a day goes by when I’m not in pain sometimes it’s simply an annoyance, other days, like these last two weeks, it’s all I can do not to have a breakdown. I dragged myself to work most days but I know I wasn’t fully there. Pain so intense that you can’t think is not conducive to being productive. I’ve been able to do enough to get by and I am grateful that my normal productivity covers for these off days but that’s not the point.

Pain.

I’ve been to my RMT for a massage three times this month and more and more acupuncture treatments. The relief is temporary. I used to feel better for days but something has shifted with my pain. It’s not just my joints – it’s all over aches, tenderness, nerve, pain, wicked headaches that two Tylenol 3 don’t even begin to touch.

I don’t look sick. I don’t look like I’m in pain. I’m stoic about pain. I remember being in a full out gallstone attack and going to the ER in the middle of the night. I’m fairly certain the doctor thought I was drug seeking but when I turned down the second shot of morphine, even though the first one barely took the edge off (gallstones are evil), he might have changed his mind. I cry in pain in private. I hold aching parts in the bathroom stall at work. I smile at my coworkers. I push through and make jokes to people so they can’t see that my body is violently attacking me.

If you follow me on twitter, I’m sure you see a different side because that’s where I can vent and cry and lament because there are people who understand what chronic pain can do to you. Even if you don’t want it to, it changes you. It makes you think you’re crazy (it’s all in your head); it exhausts you; it can make you suicidal.

This weekend – was all about rest. Much like all my weekends. I try to reserve energy for one social outing a week (even for this introvert, that’s way too little socialising). This weekend I saw no one, except my RMT, I came home and rested. That’s all I could do. I did laundry, dishes and groceries and ended up in more pain.

I’m getting sidetracked. My point is, getting the diagnosis for #rheum and accepting that I had a chronic illness was a process one that I struggled but I’ve put off managing my pain that is not in any way controlled by my meds. When we hear pain management the first thing we think of is drugs, followed closely by addiction.

I’ve already committed to join the Pain management clinic’s Cognitive Behavioural Therapy (CBT) for 6 weeks. I’ve never been in group therapy so this is going to be an adventure – I don’t like being vulnerable in front of other people. *deep breath*

And I do hope there is a prescription. I’m worried what taking as much Tylenol 3 is doing to me and worse, it’s not helping. All side effects, no benefits.

Pain.

Advertisements

What Would Rheumatoid Awareness Mean Mean to Me?

I’m participating in the #RheumBlogCarnival started by the RA Warrior – Kelly.

Rheumatoid Awareness Day, February 2nd, is a day of recognition of the reality that Rheumatoid Disease (RD) is a progressive inflammatory disease in need of greater research and improved treatments. RD causes damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. Rheumatoid Awareness Day helps combat the misconception that Rheumatoid Disease is a form of arthritis. While joint inflammation is a prominent symptom of this disease for most patients, it’s a disservice to refer to RD as merely a type of arthritis. Patients in our community have often experienced systemic effects of the disease that confirm what research tells us. So…  – from RA Warrior

  • It would mean that my former employer would have been more sympathetic to my illness by accommodating me instead of adding stress, which also exacerbated my illness.
  • It would mean that I wouldn’t feel guilty for calling in sick because I have a chronic illness that fluctuates from day to day
  • It would mean I wouldn’t feel lazy for not going to the gym, going the boot camp class, or trying to be super active – just walking the mall can totally kick my ass!
  • It would mean people would understand that getting up and making it to work 5 days a week is a pretty awesome feat and I am a damn good employee despite the fact I’m always in varying levels of pain!
  • It would mean that people would understand that I’ve spent thousands (I’m in Canada with very good benefits) in the last 2 years out of my own pocket for needles and vitamins and drugs to keep me functioning.
  • It would mean that me asking for a stronger painkiller is *not* drug-seeking and that restricting medications because of their addictive qualities leaves people who need them without relief.
  • It would mean that people understood that this is my life from now until remission or until they find a cure.
  • It would mean that my rheumatologist wouldn’t dismiss my cracking neck after my x-ray comes back clear; or that me complaining that my cycle has an effect on my inflammation levels wouldn’t fall on deaf ears.
  • It would mean that more doctors would choose to become rheumatologists – there aren’t enough to satisfy the demand
  • It would mean that people wouldn’t automatically say “oh, I have arthritis in my finger too and I take Tylenol Arthritis”.
  • It would mean that people won’t say: “You’re too young”, “You don’t look sick”, “At least it’s not cancer.” (The last one makes me angry because you can actually become cancer-free. I will never be Rheumatoid disease-free. And yes, cancer is a horrible disease that has affected my life – I’ve lost family and some are now in remission)
  • It would mean my friends and family will understand when I cancel plans repeatedly at the last minute because I just can’t get out of bed, I don’t have the energy, or I am just in pain.
  • It would mean that people would treat Rheumatoid Disease would be treated as seriously as heart disease, cancer, diabetes, etc.
  • It would mean they would stop studying how RD patients are “hypochondriacs” – you can’t always “see” my illness but do not doubt for a minute it’s there.
  • It would mean people would understand that pain, chronic illness, constant discomfort – they change you – even if you try to fight them.
  • It would mean that people wouldn’t shy away when I take pictures of my drugs, my injections, my reality.
  • It would mean that I could speak about my illness without seeming like a drama queen. I’m not fishing for sympathy – I’m looking for understanding.

I could keep going but I think you get the point. Awareness = understanding and progress towards a cure.

Rheumatology Care: A Patient's Perspective

#BellLetsTalk and why maybe you shouldn’t

I tweeted early this morning that I am not blind to how problematic this topic is. I stand by that. I am no lover of Bell nor am I blind to the opportunistic #BellLetsTalk campaign. It’s amazing PR for a much maligned (and deservedly so) company.

As someone who was diagnosed with depression at 20 and who had actually been depressed since about 15 (20 years of struggling this year)…I do not give two hoots about *why* Bell wants to champion mental illness awareness. Bell will make millions with or without this campaign. They will make the donation with or without participation. Sure they could quietly make a donation to CAMH and other organizations but that is not the point of this campaign.

When you strip away all the Bell branding and PR spiel, you know what’s left? People discussing mental illness in a way that wasn’t happening when I was 15 or 20 or 25 or even 30.

I am in awe of some of my friends and people I follow and strangers who share throughout this day. Check my twitter feed if you don’t know what I’m talking about. @SeptembreA & @neville_park stand out to me but there are many, many more, too many to list.

I see people in my twitter feed sharing their experiences or the experiences of their friends and families with mental illness.  Asking tough questions about access to therapy, drugs, support…I see people baring their deepest, darkest parts to their friends and strangers. Why? Because speaking, being heard, finding a community in illnesses that often leave us alone, isolated and even dead is powerful. And it can be empowering.

I wonder about my 15 year old self and if I had seen people talking about those feelings of self-harm, despair, isolation…if I might have sought help sooner. If I wouldn’t have fallen so low that I was in a bathtub with a knife to my wrists before I begged to be stopped.

So with all those thoughts in my mind…when I see people who may or may not have had their own experiences with mental illness filling up the #BellLetsTalk tag with Bell bashing, and nonsensical joke tweets…I feel angry. I feel hurt I feel like this confirms why we need to support this initiative year after year.

There may be someone you know who is reading through that tag right now; who’s hurting; who is hanging on by a thread and they need to see that tag. They need to see that there is hope or support or something that gets them through one more minute, one more hour, one more day.

I am not going to pat Bell on the back for doing something all corporations can and should do. But ask yourself how many companies support their employees with mental illnesses? Many don’t have policies that allow employees sick days for their mental health; or access to benefits for drugs and therapy. It’s easy for companies to get behind charities that support abused women, Movember, etc…but people are still afraid of the mentally ill. People are still afraid to say, I have depression, schizophrenia, anxiety, etc…and yet so many are suffering. If you aren’t – you’re lucky and count your blessings and knock on wood you never know what it’s like. But if you don’t suffer…statistically, someone you know is. So making that joke or dwelling on the evilness of Bell…well it can be insensitive.

You don’t have to agree with me and I certainly don’t have to agree with you but why would you let your skepticism and anti-Bell sentiment derail (and yes, if you aren’t contributing to the spirit of #BellLetsTalk day I think you are derailing) the important discussion that is happening for people who need it?

Expectedly, unexpected

My health is better and worse all at the same time. My #rheum seems to be “in check”. I’m still a human barometer but aside from that my pain is relatively controlled and my inflammation seems to be low. So of course it makes sense that something else should rear its ugly head.

I’ve had erratic, intensely painful periods for the last 6 plus months. I’ll skip the graphic details but let’s just say if I don’t notice pain related to my #rheum because my pelvic region is bringing me to tears…it’s not good.

Unfortunately, one of the diagnostic tests my doctor requested was a pelvic ultrasound and a transvaginal ultrasound. I’ve had both before. I knew what was going to happen. What to expect. And most importantly this is a test I consented and wanted to have in the hopes that it leads to a diagnosis or at the least a starting point to a referral to a specialist.

The very sweet lady who ushered me in was all about business, which is totally understandable and I appreciated her professionalism. I was a little anxious because I just want to know what’s happening to me. When I went into that appointment – I was worried that it might be painful or that it would show something way more serious than I am prepared to deal with right now (which truth be told is anything right now). What I didn’t anticipate and couldn’t have anticipated was what actually happened.

I dissociated.

From the moment that wand was placed inside me…I wasn’t “there” anymore. I was staring at the ceiling while my vision got white and fuzzy. I wanted to cry. I wanted to ask her to stop the exam. I was paralyzed. It felt like an eternity. I felt every movement she made with the wand, it was painful and I felt violated. When she said it was all over and patted my leg, I just laid there, only for moment before I got up and rushed to the change room – I was shaking and tears were running down my face.

Triggered doesn’t quite cover what happened.

Over a week later and I know what I need to do…what I’ve been avoiding for awhile now. Seeking help from an actual rape crisis counsellor. I’ve worked so hard to suppress and cope, I haven’t really dealt with what happened.

It’s been awhile since I felt so raw and scared and vulnerable. I need to develop a better coping strategy. Last weekend, I got so drunk I threw up in a bar bathroom. I followed that up with a week of crying and feeling incredibly insecure, unstable and unsafe. I hate feeling this way. I hate that that man continues to impact my life, my health, my emotions, years later.

Reflections on 2013

I felt like I was “supposed” to reflect on my experiences in 2013 earlier but I wasn’t sure I wanted to or was able to think about what I’ve gone through. 

Anyone who knows me realises that 2013 started off relatively shitty and ended much better than I could have anticipated. My life isn’t perfect but I have control over so many aspects of my life that were previously out of my grasp. 

Having control and being able to affect changes more readily in my life has been empowering. The more I exercise my control and my choices the more secure I feel in my own skin. I’m almost 35 and I’m finally able to stand up for myself, to push back, to challenge and not be afraid that I won’t be liked/loved or wanted or useful or important. 

It seems insignificant to most people I’m sure but I’ve started to make people respect my body. To not touch me if they aren’t invited. I am more assertive with my consent and withdrawing my consent. It’s amazing how strong the words “yes” and “no” make me feel. How saying “I want x” or “I don’t want y” can bolster how I feel about me. Who knew?

I have begun to understand that I don’t need to feel bad for what I cannot do. I see people running marathons or engaging in some kind of activism and I realise that I am not “less than” because I can’t participate. This is the year I learned to cut myself some slack. I was never a super active person before I was diagnosed with #rheum but even less so now. I am slowly becoming more and more active as I adjust to my new normal.

My new normal means a quiet activism. I do what I can handle mentally and physically. I have made my well-being a priority. I had to in order to survive this last year. I struggled to get up, to get dressed and to make it to work five days a week so I could continue to support myself. To survive 2013 I had to shoot myself full of drugs, take pills and vitamins daily. To survive 2013 I had to stop exposing myself to triggers and to toxic people.

When others dive head-long into twitter debates or discussing difficult subjects, I just keep scrolling or seek out cute pictures and happy stories. Occasionally I do engage – some times that just means reading and learning; some times that means not at all; some times that means pushing past the the triggering feelings to contribute. I no longer insert myself when I am not in the right head-space to handle it. And some times if I am in the right head-space, I don’t want to ruin it by bringing that into my life. Whatever I choose is OK because it’s what I need to do to survive. 

2013 was also the year I landed a dream job. It’s been four months and I am still happy and eager to go to work every day. 

It was the year I learned I could still get butterflies over someone new (it didn’t work out but it was a nice 4 weeks).

It was the year I bought myself a car (used) after 5 long years without one! Freedom is incredible! 

So now I look forward to 2014 with dare I say, hope? 

My new home

Well my hiatus didn’t last long.

Anyone who knows…knows that I’ve “shed” my old online persona in favour of being just me. To be clear – I was never putting on another character, I’ve always been me but my old name is tied to less than appropriate online activities. Activities that no longer really fit with my life as it stands today. So here I am. Just me.

I have to write and I should have known I wouldn’t last long without a blog. My very first one was a livejournal and I’ve always had some kind of online place to write, to vent, to allow others to interact with my writing.

I missed this.

A lot.

So it begins again…using my writing to make sense of my world.

Welcome.