I hate this picture

Another tourist in Iceland took this picture of us while we were hiking up to Reykjadalur to see the thermal streams. I’ll be frank and admit that I think I look terrible in this photo. My face is bright red,the weight I’ve put on over the last few years is super apparent, my hiking outfit is functional but unflattering, I had no control over the framing of the picture. And etc and etc and etc. I look at this picture and I fall down the hole of everything that I don’t like about myself. 

So I have to grab a handhold and climb the fuck out of that stupid hole because there are so many reasons to love this picture. 

Let’s list those mothercluckers.

1. This picture was taken in Iceland, and fyi, Iceland is amazing.
2. My body was allowing me to climb up a bunch of steep paths through beautiful scenery to an amazing endpoint.
3. I hiked those paths with my family. 
4. I showed my kid that I can do things. I can do things that are difficult even if my cheeks turn red and breath gets a little lost. I can do it.
5. In that exact moment I was so happy and proud of myself.
6. This picture proves that sometimes I get to beat my condition. Or at least control it.
7. It was such a good, joyful, fun day and I have a million other pictures from it but I’m glad to have this one non selfie of all three of us on the side of mountain having an actual adventure.

So I guess I don’t hate that picture. And that means I can’t hate myself in that picture,or the body I inhabit in it. 

It can be hard to remember sometimes that I’m so much more than what I look like but it’s worth it to remind myself that I am. I just need to do it more often.

This picture i love without reservation. Just wanted to show that those exist too

Numbah 9. Numbah 9

Yesterday was my 9th humira injection. The side effects are nearly gone now, but I still learned an important lesson.

IMPORTANT LESSON:
Don’t even think about giving youself an injection until that epipen has been out of the stupid fridge for at least 45 minutes.

I talk a big game about how yes, the injection is painful but it’s loads better than the pain of AS but yesterday made me reconsider that sentiment for 15 excruciating seconds. I’m over it now. Mostly.
Maybe.

Ultimately 15 seconds is small change compared to even the edges of pain I had over the weekend. I’m leading a better life than I have in a long time and that’s worth a lot.

I went to Berlin two weekends ago and rode a bicycle around town! And walked up approximately 15 million stairs and played kegelbahn. I went to the V&A last weekend and got to see my kid’s smiley face when he realised we were all going out together instead of just him and his dad. I’m going on a country walk this weekend.
It’s springtime!
Rebirth is everywhere!
Possibility etc

I’m being a little sarcastic because of how I’m not comfortable with genuine emotion. But really, truly things are getting so much better.

3rd time’s a charm (knock wood)

I gave myself my third Humira injection yesterday. In the right side of my stomach, in case you were wondering.  For the first time I don’t feel like hell on the day after injection.

I almost don’t know how to process this in my brain.  And I don’t want to get crazy here, but I can’t help wonder if maybe this means I won’t have all the nausea this weekend. 
Fingers are crossed, friends. Fingers are crossed. Toes, too.

Of course it’s totally possible that just by writing all this down I’ve jinxed myself. By lunchtime I might be unable to bend my knees. My sacroiliac joints might be gearing up for the punishment even now.
Who knows? At least things are working at the moment. At least I had an excuse to use the happy Kermit gif. I’m putting a check in the win column for this morning.

Update:
And then, after lunch the dizzy spells hit

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 neverending 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 if 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.

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 getting 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 not 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.

Jumble sale

1. Do you know how you can tell I’m feeling lazy?  I do a list of unrelated items on my blog.  Other clues include, but are not limited to: Spending all day in bed reading trashy books, ordering curry for dinner and eating the leftovers for the next three days, and the state of my kitchen.
2. Somebody found me by using the following search term yesterday “is sal paradise a reliable narrator?” and my answer to you, intrepid internet surfer, is NO Sal paradise is absolutely 100% not a reliable narrator.  He spends the whole book hopped up on goof balls for goodness sakes!  Not to mention all that cheap wine.  Seriously, dude is not to be trusted at all.
3. Vienna, I have lots to say about the trip to Vienna, but will be brief as I don’t have my photos handy.  It was a really surprising city.  I expected it to be pretty and sort of cold (not temperature wise but attitude wise).  I was right in the first case and totally wrong in the second.  Vienna was one of the friendliest and most comfortable cities I’ve been to.  People were super nice and helpful, the city itself was very manageable and easy to get around.  And, of course, it is beautiful.  Really breathtaking at points to be honest.  I would like to go back, maybe in Autumn or Spring and see more of it.
4. While we were in Vienna we went to the neighbourhood where Jeremy’s Bubbie grew up.  The door to her old building was open so we went in and poked around.  Then we walked down her old street to the square where more of the family lived and then poked around the park, Augarten, nearby and imagined her and her sister strolling through and checking out boys.  Of course maybe the two of them were more serious-minded than all that but I choose to think that even if they were they still had the occasional frivolous stroll through the park and giggled under chestnut trees together.
5. November is officially the month of action.  I’ve already requested a bunch of time off so I can make a serious attempt at completing NaNoWriMo.  I want this to be the year of the first draft (you know like I’ve been saying every year is the year of the first draft, but this time I mean it).
6. On that note, if anyone wants to form a posse of support, cajoling and critiquing for November, please give me a shout.  Yes, writers do work in a vacuum, but it also helps to know there are other people in similar vacuums toiling away at the same time as you and with a similar goal.
7. The allotment has been much neglected due to reasons involving travel and arthritis and laziness.  This week that must change.  Our tomatoes are almost ready.
8. Arthritis is a demon.  I’m taking a new medication (sulfasalazine) and am only on a half dosage so far and it makes me feel horrible.  Nausea and headaches and super itchy skin and, so far, it’s not helping the arthritis even a tiny bit.  That will take 3 months at full dosage.  Apparently once I make it through the first month and move myself up to full dosage it should get better, right now it just makes me feel miserable.  But I’m pushing through and doing my best and trying not to bitch TOO much (I still bitch about it a little though, maybe more than a little even).
9. Oliver’s face is back to a normal size although he does still have a sad shaved patch.  This has lead to many off colour jokes that I will not repeat here.
10. I promise not to be so lazy next time and to provide a real and proper update about something interesting and funny, scout’s honor (insomuch as someone who never made it past Brownie in the Girl Scouts can give a scout’s honor).

Pause for Sympathy

I promise I’ll tell you more about Barcelona and Primavera and weddings and Florida soon.  Honest!  But right now I need to tell you about the fact that I have had a cold since the 20th of May and it won’t go away!  It is very frustrating and I would like it very much if you would feel lots of sympathy for me because I have been sick forever and my voice sounds ridiculous and I’m very tired of it.  VERY TIRED!

 

Everything’s Coming Up Carolyn!

1. I am now a permanent resident, thanks to Jeremy who braved the queues and surly Home Office staff at Lunar House in Croydon.
2. My accupuncture appointment got moved from 8pm to 7pm tomorrow
3. Swanky celebratory dinner tonight.
4. Someone complimented my new cardigan and told me it was a very good colour for me.  She was totally right, it is.
5. Also, right now, this very second, neither of my sacroiliac joints hurt.  This hasn’t happened for about 4 weeks now.
6. I got to pick 3 sets of numbers for the office lotto collection.  If we win, it’s totally because of me.

Unsurprising

The doctors in Detroit remain baffled by my father. They haven’t been able to figure out exactly what’s wrong with him.  They had scheduled a lung biopsy for Monday but he spiked a fever so they held off.  They gave him a blood transfusion (freudian typo: blood confusion) and changed his ventilator settings.  maybe today they’ll go forward with the biopsy.  Who knows?  Right now it feels like they’re just trying to rule out every potential illness in the hopes that they might hit on what’s actually wrong with him.

It’s all pretty frustrating.  To say the least.

Life in London is largely normal except for my new predilection towards crying while watching soap operas (although apparently Hollyoaks made lots of people cry yesterday SO IT’S NOT JUST ME OKAY??), actually we can probably expand that to my new prediliction towards crying at just about anything that involves emotions, which is most definitely atypical for me.  I think I have cried at 5-6 films and tv shows ever in my life before this week and at least half of those we Extreme Makeover: Home Edition, and that’s not my fault, that’s emotional manipulation of the highest order.

Happily,  Oliver seems to remember who I am now and he is  content with the return to our old cuddling schedule.  Jeremy also remembers who I am, but I prefer not to discus our cuddling schedule, it would be vulgar.

Bad Acoustics

I always forget about Koko.  I forget that it is a bad venue.  I forget that the acoustics there are total crap and that they make even the best bands sound muddled and lousy.  Do you see where I’m going with this?  I’ll tell you where I’m going, I’m going to a disappointed place because the Yann Tiersen show was not nearly as good as the last time I saw him.

I can only blame the venue so much for this though, given that the last time I saw him was at the Butlins in Minehead in a space that smelled of hotdogs, old cigarettes and stale spilled beer.  He didn’t have a full band with him so there was no saw player, which might sound like a nitpicky thing to complain about, but seriously, it’s not the same recorded.  And his newer music was a lot more guitar based and I prefer the lusher more heavily orchestrated stuff.

So yeah, it wasn’t bad, but it wasn’t as good either. 

In other news, the doctors are now saying that my father may not have ARDS at all, seeing as he is not responding normally to treatment (he just HAS to be weird doesn’t he?) and they are pursuing other possibilities, one of which is a specific type of pneumonia caused by a fungus found in bat droppings. This is apparently not so far-fetched seeing as he has traveled to South America a few times in the last 3 years and had to clean bat leavings off the siding of my parents’ house in the last couple years.  So, yeah, guano may be the root cause of this whole ordeal.    Hopefully there will be news regarding this later today.