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Lessons from the future past

I’m turning 40 in just over a month. That’s okay. I’m not feeling crazy or mad about it. At least not yet. Aging is natural and my life is like 95% good. I have a good family, plenty of knitting to do, books to read, places to see, and a couple solid guys in my life to love. My blessings are many.

What I am feeling, however, and I know this will come as a shock to you, dear reader, is melancholy.

Two summers ago my friend Dana died the month before her 40th birthday. And I keep thinking, in this month leading up to my birthday, about how Dana used to give me advice from 2 years in the future.

EG “You can’t know this now, Carolyn, because you are much too young, but when you’re 27, you’ll know not to tighten all the screws on your Ikea furniture until everything is put together.” 

That honestly stands as some of the best advice I’ve ever received in my entire life.

By the end of her too-short life, she had become a cautionary tale and that is still really hard for me to reconcile with the Dana I knew. The Dana who was full of talent and lessons. The brilliant shining Dana I knew and shared a home with doesn’t match the lost, unwell Dana she became.

I want to have something clever to say about addiction and death and the holes that get left behind in our lives. I want to make something meaningful out of those holes. These patched up bits inside me have to be there for some purpose, don’t they? Except I don’t think I believe that. We survive these losses, these sorrows, because we have to. We don’t learn any lessons except how to go on despite the presence of sinkholes that sneak up on us when we least expect them.

That’s right, an episode of RuPaul’s Drag Race might make you cry when two glamorous drag queens talk about how they were able to conquer their addictions and an anger will well up in you at the absolute unfairness of it all. The fucking injustice! Not that they should have lost their battles, but that she couldn’t come out victorious too. That there wasn’t enough victory to go around.

Maybe as I get older I’ll find out some more answers. I’ll have to do it without the aid of my old friend though. At least I’ll have well built flat pack furniture and so many good memories to help keep the hard ones in balance on the days when they sneak up on me.

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I love you Humira, but

We need to talk. My next injection is on Tuesday and right now my sacroiliac joints feel like they’re coated in painful glue. It’s not cool to crap out on me with 4.5 days left to go.

And about this fatigue lately. Is that you, the methotrexate or the AS? Or are the three of you working on some dastardly plan together? I can handle the normal tired but falling asleep on the bus isn’t cool. Same with yawning so hard it feels like my jaw might crack.

So if the three of you could settle down and work together a little more I’d really appreciate it. I have a dogs fancy dress competition to go to and friends to see. 

You’re still great, Humira. I love your new formula and the way you get my immune system to chill out most of the time but if you could make a little more effort over the next few days I’d really appreciate it. I don’t want to miss the dogs in fancy dress again this year. 
Xoxo

Carolyn

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#5

I’m taking my 5th shot this evening. After the dizzy spells that followed #3 I decided to shift my injection time to later in the day and that seems to have improved things a good bit.  I still get the exhaustion but the other Humira specific side effects are much reduced. The day after taking my methotrexate the week of my injection is still rough though.

While these meds have reduced my pain by a lot I’m still dealing with regular pain. It’s actually hard for me to remember a time before pain. It’s just part of life now and even though the reduction is great it is still exhausting to hurt all the time and to wonder what will hurt next. This past weekend has seen the arrival of new stiffness in my back. From my SI joints up into my neck. It’s weird and unpleasant. I spent the weekend feeling like I just couldn’t stretch enough and worrying (without any evidence or real reason)about fused vertebrae.

But I give myself that injection tonight and hopefully that will help. I also have to try and avoid the snot that is currently covering approximately 95% of my child’s face.

And tomorrow I get to check out an exercise class conducted by the local branch of the NASS specifically for people with Ankylosing Spondylitis and I’m pretty excited about that. I’m trying to find better coping tools lately and i think this will be a good one. I’ve also been trying to do more yoga at home. I’m not ready to go back to a regular class but a friend recently shared and interview with Dana Falsetti that really struck a cord with me. As a result I subscribed to her series of classes and have been working on the first 2 videos and am trying to get back some control of my body. I feel like even a little control is better than none.

So things are positive, there is improvement. There is also still pain though. There may always be pain, the main goal right now is continuing to reduce it.

 

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Reasons

You might be shocked to hear this, but I don’t actually like talking about being sick very much. I don’t like talking about pain and medicines. It gets boring because it’s something I have to think about all the time. When do I take this medicine? When do I take the other one? Is this the week I need to get a blood test? Can I make it to the bus stop toda
y? Will I be in too much pain to function by the time I get to work? How many official units of alcohol is that glass of wine? Will my liver break if I drink it? Do I look yellow? Oh great, now my knees are hurting again . . . and etc.

It’s neveregiphynding and it’s stupid and by the time I’m done thinking of it I’m so annoyed with myself that I don’t want to say it out loud, because that will just take to the next level of boring. And I don’t want to be that person. I don’t want to be that dickhead who drones on and on and on about being sick and how hard her life is and wah wah wah. You know?

But then, last summer, my rheumatologist started talking to me seriously about going on biologics, particularly Humira, because of the fact that I’d started to have trouble with my left eye. I started looking for more information about the drug and about peoples’ experiences with it and my research was largely fruitless. A lot of sites about arthritis are geared towards older people, and even those that are geared towards rheumatoid conditions have so many conditions to cover that it can be hard to find the parts that relate to you.

I’ve since found more, there are Facebook groups you can find giphy1if you hunt around, but to be frank Facebook groups often have a higher than average whackadoo count. Like I’m sure they have loads of awesome folks too, but the ones who talk the most are typically the ones who want ALL THE ATTENTION RIGHT NOW ( LOOK AT ME, LOOK AT ME, LOOK AT ME!!!). And honestly, I’m tired enough as it is without having to think about some random character’s drama with their neighbour that may or may not have something to do with their flare.

So I made a decision. I decided to post about this more. And I decided to do that so that other googlers out there like me might find something useful and helpful and possibly a little funny that might help them get to grips with starting a new hopeful sounding but also scary sounding new drug. And it might be nice for them to find out that someone else is in a similarish situation. Because even when you’ve got loads of people who care for and support you it’s still lonely to have a chronic condition. I’m hoping to make it slightly less lonely by talking about it more.

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I ordered a medical alert bracelet yesterday.

I’ve had a head cold for the last week and that’s been making me think about medical emergencies and the things I need to remember to tell doctors.
That sounds melodramatic, I know, but it’s not. When you’re taking medication that suppresses your immune system you have to be careful about colds.

Colds can turn into chest infections and chest infections can turn into pneumonia far more quickly than anyone would like. And as someone who used to get chest infections at least once a year up until a couple years ago, I want to avoid ever gettAnjoWashHands2ing one again. When my scratchy throat showed up last week I wanted to kick everything on earth. I didn’t though. I just started drinking all the fluids and taking hot baths and blowing my nose every 5 seconds. And washing my hands every 3 seconds.

I’m very serious about clean hands these days.
This was my first cold since starting either methotrexate or Humira. If it had turned into a proper infection it would have stopped me from taking both of these medications until 14 days after my last antibiotic.  At this point that would have meant starting over from scratch. I’m not really interested in doing that right now.
Luckily (knock wood), It looks like I’ve avoided that.

You might find yourself thinking, Carolyn, these drugs sound like more hassle than they’re worth what with the exhaustion and the nausea and the itchy scalp and the dangerous head colds. Is it really worth it?

To which I would say to you, yes. Absolutely.  The exhaustion, nausea and itchy scalp should all fade as my body gets used to this new regime, hopefully within the next 10 weeks or so. In the meantime,  do you know what I did today? I walked a half mile across the park to the bus stop rather than taking one bus 4 measly stops to get to another bus.
This might burnsnot sound like much so let me reframe it.
For the first time in over a year I was able to walk a half mile. I did not have to stop or grit my teeth.  My
feet did not swell to twice their normal size. I just walked across the park. There was still some pain, but it was tolerable, almost negligible, compared to even 8 weeks ago.
That’s amazing. That’s worth having to order a medical alert bracelet and wash my hands like Howard Hughes.
I’m walking a fine line between nervy fear and this weird aggressive optimism lately. Its a strange mental place to inhabit but it’s worth it if I can keep walking across the park.

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Arthritic happenings

So you know I have rheumatoid arthritis,  right? You know I developed it after eating a bad egg sandwich on Boxing Day 2005 in Barcelona, right? I’ve been sort of rediagnosed with Ankylosing Spondylitis now, because a year ago it began to affect my left eye. And you may or may not know that in the last six weeks I started 2 new medications. Methotrexate and Humira.
The methotrexate came first. It’s technically a chemotherapy drug. I take a low dose once a week.  It makes my hair thin and my stomach feel rough and my body weary. It didn’t do much for my pain or inflammation. However it works with the Humira,  which I started last week, and is meant to increase the length of time the Humira works.
I took Humira for the first time last week. I have to inject myself fortnightly.
The day after my first injection was awful. All my bad spots throbbed with pain. But the second day was amazing. My pain was reduced by a third to a half. Then on Friday I took my methotrexate again and it was pretty awful.  My arthritis pain was still much reduced but I spent the weekend battling nausea, exhaustion, and a really itchy scalp. Saturday was a wash. Sunday was half a wash, but by Monday I was mostly okay.
Hopefully when I take my next injection on Tuesday it will be a little easier and I will be able to walk freely and sit on the floor with my kid and start doing yoga again.
There are scary parts too. These drugs suppress my immune system,  because inflammatory conditions like this occur when your body attacks itself so that needs to stop that from happening. Since I live with a small germ factory this is a little scary. But it’s a risk I’ve decided to take because right now that same germ factory has a mom who can’t do very much a lot of the time and that’s not cool.
This is an exciting and scary time. I’m hopeful and anxious in equal parts. But I can walk more easily, and maybe my cute shoes will fit better now that my feet aren’t so swollen all the time.

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I said to Hank Williams, how lonely does it get? Hank Williams hasn’t answered me yet.

When my dad died 4.5 years ago he left instructions about how we were to mourn. Specifically, we weren’t supposed to mourn. He wanted a party with beer, music and laughter. He got that party and there was plenty of all three of those things. But I’m still a salty 15 year old at heart. I don’t like being bossed by my dad and I don’t react well to it even when the bossing is coming from beyond the grave.

I mourned actively.

I sent one of those stupid sky lanterns into the air and it blew into a tree. I wore his old Cheap Trick t shirt for weeks. I listened to songs by Johnny Cash and Wille Nelson and I wept (I avoided Patsy Cline, I’m not an idiot). And now, even though my father was neither Catholic nor particularly religious, and even though I am neither of those things either, I light candles for him in elaborate churches and cathedrals.

In Bruges I chose the gaudiest most gilded spot in the entire cathedral (no small task) and I put a Euro in the little box and I prayed to the Virgin Mary. I grew up Lutheran though, so I probably did it wrong. That would have bugged him too, he was a man who liked jobs done right. We’ve been to Venice twice since his death and he gets prayers there too. Give me an ornate church and I will light a candle just to spite my dad.

Not really. I tell myself that’s why I do it, but I also do it to ask for grace. I do it to let him know I love him. To remind myself of him and take a moment surrounded by opulence to think of a man who loved his family and beer and country music and HAM radio.

This May my old roommate and good friend went into the hospital. She is unlikely to leave the hospital. My dad taught us to play Texas Hold ‘Em while smoking a cigarette and drinking a beer in the back room of our old apartment in 2004. Much like I was on the morning of Nov 13 2010 I’m sitting at home this morning waiting for bad news after a message that her condition worsened last night. These last few weeks of waiting and wondering from afar how she’s doing have been unfair and impossible. I feel like I’m going through all 7 stages of grief simultaneously and she’s still there, laying in a hospital bed with machines helping her breathe.

We were in Venice a week ago. While we were there we went to the Church of San Giorgio Maggiore to see the enormous mesh sculptures of Jaume Plensa. A head and a hand that appeared, to me, to be offering a blessing. I put 2 Euros in a box and I lit two candles in front of the Virgin and first I asked her to watch out for my friend, I asked her to keep her safe and surround her in light. And then I lit a candle and prayed to my dad, who is not a saint and as mentioned above was not Catholic. But I prayed to him anyhow. I asked him to help, if he could, if that’s a thing dead parents can do. To sit with her now, and if necessary, to show her the ropes after, in wherever the after is. To give her a cigarette and talk to her about whatever you talk about in that place.

Then I went outside and I gave my kid a hug and as I looked across the lagoon at San Marco I tried not to be too angry at either of them, my dad and my friend, I tried to send glowing loving thoughts to them, particularly to her. I’m trying to do that even now, but I’m listening to Leonard Cohen covers so mostly I’m crying and thinking selfish thoughts.

I’m thinking of how beautiful and talented and funny she is. I’m thinking of the time we sat on some rocks at a little beach in Roger’s Park drinking beer and telling jokes in terrible English accents. I’m thinking of the day she came to my room and handed me a ring she’d made me and then 6 months later demanded it back before handing me a new one telling me the old one was terrible. I’m thinking of sitting on the back porch with her, barbecuing dinner and talking about everything. I’m thinking about her wedding on a tropical beach and how afterwards we all laid on lounge chairs and stared at the huge,shimmering moon. I’m thinking about going to see the Pixies with her and her sour face when they played Here Comes Your Man and how I still made her laugh by jumping up high in the air because I love that song at least 10 times as much as she hates it. And I’m thinking about how she’s still present tense but any second now I may get a message that changes her to past tense and that cannot be right no matter how many benevolent spirits are there to hold her hand. It can’t be right and it won’t ever be right and I hate it.

So right now, right this second, I’m going to think of her at brunch as she was 12 years ago, looking at me across the table over good coffee, fresh orange juice and an exceptional plate of Eggs Benedict. I going to think of her glowing in the sunshine of a beautiful summer day in Chicago and I’m going to think of her joyful and laughing. And I’m going to hold onto that for as long as I can.

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