Comorbidity

Comorbidity.

That is an ugly sounding medical word.

I always knew what my comorbidity would be when I was diagnosed with RA – depression. I was first diagnosed with depression in 2000 and have struggled off and on with it since then so when I read that it was common for RA patients to become depressed, I braced myself for it. I’d been there before. I knew what it looked like.

January through August while I was sad about things and would cry occasionally (if you can’t brush your own hair, that will bring tears to your eyes) but I wasn’t depressed.

If I’m being honest, I’ve been on antidepressants more or less for the last 13 years, without them I have about a 3-6 month window before the darkness crawls back in.

So in August when my inflammation continued to increase despite methotrexate and sulfasalazine and the pain was unrelenting I started to fall into the darkness.

When I started to take Enbrel, I don’t think I realized just how much I expected it to do, to fix, to reverse, to heal. I wanted it to be my miracle. To take away the pain and the exhaustion and make me “normal” again. It doesn’t work that way, at least not for me.

One month – nothing

Two months – nothing

Three months – less visible inflammation but overwhelming exhaustion and not enough improvement for my liking

All of this coupled with my yearly bout of Seasonal Affective Disorder and the impending holidays in December I turned further inwards. I didn’t want to blog much. I wasn’t tweeting, though I’d check my TL multiple times a day, watching other people’s lives scroll by. Therapy was an hour of me saying, “I don’t think I’ll ever be well”. The first time I said that, something in me broke – in that moment I acknowledged my biggest fear – that I wouldn’t know what healthy felt like anymore.

I started to get angry and scared and hopeless.

I was angry with myself, my body and if I believed in God I might have railed at him a bit too. I became really resentful of people who’ve make peace with chronic illness – like how the fuck can you be ok with this shit (that’s the toned down version of what was in my head).

The handful of meds and vitamins and supplements that I take twice daily and the weekly injections were starting to wear me down. The frustration with work and my lack of accommodation. Being unable to make it through a 5 day work week, etc…the list of things that were upsetting me and adding to my fears of never being well just kept piling up.

Saturday nights were something I was beginning to dread – two needles one full of chemo and one full of protein inhibitors. Whee! /end sarcasm. A few weekends ago I went to give myself the shots and I had a mild panic attack. You do not want to have a panic attack when you have needles in your hand. I cried getting the needles ready and during the injections and for a good hour afterwards in bed. My shaky hands left me with 2 very ugly bruises on my upper thigh and an aching feeling that this was going to be my life for the foreseeable future.

Then I slipped and fell out of my bathtub.

That was my breaking point. When I went to get myself checked out – 4 days later – my family doctor and I talked about how I was coping. I wasn’t. So she reviewed my latest set of blood work – everything is down in normal range. With that she said people who suffer the comorbidity of depression often report worse stiffness and pain. At first I was annoyed – was she saying that this is in my head now?!?! But because I like her, I put that thought aside and listened. She told me to increase my vitamin D, start exercising and detouring on my way home at least twice a week on top of the prescription for an anti-psychotic used to boost antidepressants.

It was a total wellness prescription. At first I wasn’t buying it. The annoyance for being told things are in my head was hard to get past but I was comforted by the fact that my blood work was mostly normal for the first time in a year.

So with the new prescription added to the arsenal, I waited.

Other things began to turn around at the same time. Work picked up for me. I made it to a 2nd interview with an organization I would love to work for and I had a great chat with a recruiter that I’m now working with. So there was hope and optimism. I felt my mood making a turn around. Did that mean I wasn’t in pain? Absolutely not. I do think I’ve started to accept that some degree of pain and discomfort will be apart of my life from now on, just like the medication.

Then last week happened. I was full of energy I hadn’t felt in over a year. Bursting almost. I had a dance party in my apartment; I took extra time to do my hair, I had a spring in my step…that lasted all of 2 days and then the bottom fell out again. By Wednesday night of last week I was starting a flare…the burning and the swelling was back in full force. Thursday I took more pain meds in one day than I had in the previous 2 weeks but I had plans so I pushed through. I went to work, I kept my plans with my best friend (I did have a lot of fun) but at the end of the night I crashed. I was lying in the hotel room wishing a bucket of ice would appear so I could dunk my hands in it. I also developed a new pain. I’d been to a comedy show and I’d been laughing for about 2 hours straight. During that time I started getting chest pain when I breathed in too sharply. I would have been more freaked out but I knew it wasn’t my heart (since my echo cleared it last month) but it’s most likely costochondritis. Even now, I still get the occasional sharp pain while breathing.

I can’t help but feel like my body was leading me on and then reminding me that it’s in control. How does one not feel depressed about that?

Advertisements

6 thoughts on “Comorbidity

  1. There’s a chance you overdid things when you started to feel better, a bit of a chance anyway. It’s really easy to do more when you feel good and pay later.
    Are you still on the Enbrel? It took me 6 months to realize that the Humira actually was making a noticeable difference.

    I am just back on it after being off for a month and also after talking to the rheumatologist about not getting the same zing from it anymore.. I had a little extra in hand so he said to take it every week and after 3 weeks the stiffness is a lot less.

    Comorbidity is a depressing word all by itself. When I first read about it I was angry.. Here’s hoping that if you keep up the wellness prescription you will have more of those energy episodes

    • Oh I’m certain I overdid it. I couldn’t help myself…everything seemed to be failing into place.

      I am still on Enbrel – 6 months soon – it has definitely made an improvement. I’m actually on MTX, Enbrel and sulfasalazine. My MTX was just increased before Christmas. I want to talk to my Rheumy to be clear about what is and isn’t possible – is full remission w/o pain possible or will I always be susceptible to weather changes and flares with increased activity – which still isn’t even close to “normal”.

      I am making a effort not to fall back into the darkness but these setbacks are difficult to handle sometimes. I’m going to try getting to the gym twice this week for a little cardio. It’s too cold to walk comfortably.

      • Well I would say be nice to yourself and try to have some fun. Did you ever read Jane Waterman’s blog, Blackbird at Night? She has had a really long struggle with depression also

  2. Ive suffered with depression most of my life, and RA did not help it at all, it’s made it harder to cope with MORE loss and unpredictability. Its tough when more days feel bad than good, you’re not alone!

  3. Again your post breaks my heart. I can do nothing but hear you and offer any thoughts that come to mind.

    Notice and remember the steps that made you feel better, more whole.

    You’ve been in a fight with your body for a while. That is not going to be resolved all at once. Even with the relapse you found a better place to be was within your power & grasp.

    Disappointing, yes. But it does point to an exit from the dark place. It may take time and extrordinary resources to get there. But it is there. That is a BIG thing.

    Huggs & be as well as you can be, my Internet friend.

    I’m thinking about you.

    Huw

  4. Just wanted to leave a comment on your post earlier today. Make no mistake that your continuing struggle hits many of us in the heart. That giving up the fight will be upsetting to us is, perhaps, not in itself sufficient reason to continue the fight. But be assured that you’re loved and your survival through this miserable process means something to those around you.

    *careful, gentle huggs*

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s