So its not the Apocalypse then?

I know. I know. Its been forever since I’ve written…

Here’s the thing. You’d think that the Apocalypse would be a great time to write about life and all the things. As it turns out, even when you think the world is ending, and everyone is walking around with the new plague, even then… You’ll watch Tiger King on repeat before you update anything else in your life.

All those people who tweet about needing time off from busy lives so they can redecorate their houses, clean out their closets, or work on themselves… Turns out they were all wrong, and we are all lazy as fuck and would rather watch ALL OF NETFLIX before doing anything productive. I am totally one of those people. I spent the first four weeks of lock down baking more than I ever have in life, and eating my body weight in chocolate. OK, that is a gross exaggeration but you totally know where I’m going with that. Instagram is filled with hashtags about “quarantine living” and the oh-so-regrettable “quarantine fifteen”. (insert face palm here)

So, I will admit that today, when I find out New Zealand is ending its lock down in three days, today is the day I finally come back to you. 51 days of lock down, and countless before that when I was free as a bird… Today I find my words and rejoin the internet writers population.

I found a meme yesterday that basically describes everything this year (pictured). Its Luis from Ant-Man explaining in his signature elongated style about all the things that have happened in 2020. My favorite part is “murder hornets invading”. Its not a true Apocalypse unless something ridiculous happens.

However a plague that has infected millions is less ridiculous, and fairly scary. I’ve re-watched “I Am Legend”, “Contagion”, and “28 Days Later” a LOT recently.

However, its looking less like an apocalyptic event now that some countries (like the one I currently reside in) are reopening and rebuilding economies. I know for all those crazy flat-earthers this may be a setback in their doomsday plans… Chill guys. I’m sure you’ll get another chance..

So, what does a post-pandemic era look like for me? Well, first of all I’m not an idiot, just cause my country is releasing some restrictions, does not for a second mean that we couldn’t still be overwhelmed with cases. Our borders will remain closed for a long time. Maybe some people will be heading out mask less and go back to their lessened hand-washing traditions -EWWW!!!- but, as someone who is immune-compromised ALWAYS, not much will change for me. I’ll still be careful in crowds, still tense up when I hear a sneeze on the bus, and wash my hands religiously because that’s just plain common sense!

I’ve been to the hospital twice for Infliximab infusions since our lock down started. Each time I was tested at the door of the hospital for fever symptoms, and had to wear masks and gloves the whole time. Which, for those of you who don’t know, is HOURS! Anyone who has worn a mask for longer than an hour feels my pain. As great as they are for slowing the spread of germs, they are also a mini sweat box for your face. I overheat so easily, and after 30 mins in a mask my face feels like its been in a steam room. You’re overheated and very aware of your dental skills, which will only get better after prolonged oral sweat box use. Ugh.

My mom and I have taken walks along the water, and lamented at the emptiness of the city. I’ve gone to the grocery store once a week, which was nerve-wracking as well as infuriating. I became well aware very early on that there are people who don’t give a crap about anyone but themselves, and flout the rules excessively. Also, this will be the last year that I live without a pet. Animal therapy is so very important for my mental and spiritual health.

So, what will I do when my freedom is given back to me in two days? Visit friends and play with their pets! Visit the cat cafe when it reopens. Catch up with friends. Visit my tattoo artist. Order a meal at a restaurant that hasn’t been cooked by me or mom! And… stay at home like I always do because that’s what living with chronic illness has always been for me.

I know, boring, right?

Oh well, at least I am back here with you. Words, thoughts, and emotions, as often as I can, and as often as you care to hear them.

Airplane Resolutions

So I’m 6 hours into my 9 hour flight from Honolulu TO Auckland and I realise I’ve probably already caught up on more movies on this plane than I have in months at home. I’ve watched “Stuber”, “Wild”, and “Godzilla: King of the Monsters”.
6 hours of comedy, life challenges, and monster movies, and I’ve come to realise some things about my life.
Now, most people like to make new years resolutions…but not me. I like to make long plane ride resolutions. Why, you may ask? Well think about it… What are you most likely to keep a promise to yourself from- A night of drinking, partying, and general debauchery? OR, a really long plane ride where you’ve been forced to TRULY THINK for hours after the boredom of too many movies in a row kicks in?
Exactly.

2010-2019
I faced some really hard realities about myself and my life this decade. I’ve dealt with very difficult situations, and they have taken quite an emotional toll on my mental and physical state across the board.
I won’t share all of them here.
But I will share what going through them has taught me and how it’s helped me move forward in a positive way.

1) I forgive you.
I forgive those who have hurt me. I forgive those who have harmed me physically. I forgive those who have harmed me mentally. I forgive those who have cast me out. I forgive those who have spread lies. I forgive those who hurt me because they hurt themselves. I forgive those who have cheated on me. I forgive those who have wished me harm.
I forgive you.
And I forgive myself for holding onto the hate and dispair that I carried for so long because I could not allow myself to let it go.
But I have… I’ve learned to let it all go.

2) I’m not afraid to be alone.
I’ve spent so many years thinking that the key to my happiness was waiting for me in another person(s). But this decade has taught me that being alone and happy is so much better than being in relationships with the wrong people. Nothing is worth staying in relationships where you are undervalued, abused, disrespected, or manipulated.
I still believe in soul mates. I always have. But I now believe they don’t have to be romantic. And we can have as many as we like. It can be our family members, our friends, and strangers we meet along our journey.
I will never again settle just because I think I’m unworthy of love. I won’t settle just because I’m sick and my mortality scares me. I will be alone as long as I like because I realise I have never been more surrounded with caring people than I am now. Love takes many different forms, and I feel truly relieved to finally realise that.

3) My illness doesn’t define who I am.
It’s been 12 years since I was first diagnosed with an autoimmune disease, and 7 since it turned severe. I’ve been pricked with more needles than someone should in a lifetime. I’ve been prescribed all manners of chemical warfare to irradiate an incurable disease that is destroying me from the inside out. One day, sooner than me hitting old age, I will die from this disease.
But I am an entire person without it.
I am fighting every day to make this life a little bit longer, and every day I succeed just a little bit more. I live for my passion of cooking, and song, and coffee, and cats. I live for my family and for my friends.
I live for myself for as long as I breathe air on this earth. That’s all that matters.

Thanksgiving

I know it’s been awhile since my last post. To be honest it’s been a bit of a shit show for me health wise. I will write an update soon.

Until then, I made a small Thanksgiving feast for my mom and I today. Pain in the hands definitely made it a challenge. But I think I did as good a job as was possible.

Happy Thanksgiving to everyone out there.

Airport Musings

I have always been a traveler. Partially because my Dad was a pilot, and flights were inexpensive in my youth. Mostly though, because I love to explore.

Before I got sick I had visited over half of the places on my “travel bucket list”. At 32 that was a pretty good feat. I’m not sure how many people that age could say the same. In fact, I was so grateful that I had, as traveling with chronic illness became less easy. Not so much the traveling with pain part (though it definitely factored in), but more because I couldn’t work anymore, so no money to explore the world.

These days most of my travel is around the country (New Zealand), to visit friends or take long weekend road trips. Once or twice a year I also go back home to Hawaii to visit the family remaining there. So while I don’t travel as much as I like, I still frequent airports.

Airports.

*sigh*

No one likes airports, let’s just say that right now. Crowded with people, long security lines, and overpriced mediocre food.

I dislike them even more now that I live with my disease. My pain isn’t usually visible, so I often don’t request wheelchairs when I really should. I push myself to walk the long halls to the gates, each step becoming more crippling, as I ignore the pain tweaks traveling up my spine. People scowl at me when I stop abruptly to stretch my sore limbs, not understanding why someone my age is clutching her back like that of an elder. They don’t understand the stress on my face when I finally get seated, muttering under my breath about the pain. But this has been my life for seven years now, and I’m used to treatment from others. My disease is invisible, and might as well not exist to those rushing past me to get to the gate, like a car speeding up to a red light.

Today I’ve luckily given myself ample time to get to my gate. I woke up with a terrible pain flare in my left knee/fibula. It has me walking with a limp, and I’m cursing myself for not bringing my cane, which sits uselessly in my closet at home. People have pushed past me in a hurry a couple times already, causing a few painful stumbles on my part. I see them now sitting at the same gate as I, annoyed at their rudeness.

*sigh*

In front of me is a wall with “Baggage Claim” posted on a sign with an arrow pointing westward. Amused, I wonder if that’s where I can find my illness insecurities. Perhaps they are making their rounds on the conveyor belt. Perhaps someone else will pick them up by mistake, maybe even take them home so I will be rid of them at last. How fortunate I would be.

I watch a hysterical child run around the gate like she’s been given candy to keep her quiet and it’s backfired. Her parents look tired and uninterested in her antics. As she repeatedly jumps up and down on the bag weigh machine, I pray it stops working so the anxiety of my bag being too heavy is alleviated, despite my knowledge of it being under already.

Airport anxiety + chronic illness = more pain. Hopefully it will cause me to pass out on the plane.

Moving On

Today I am moving into a new apartment. It will be the fourth residence I am to live in since coming to New Zealand two years ago.

This may make it seem like I enjoy moving, but really it’s a big pain in the ass. Especially for someone with a chronic pain disease like Rheumatoid Arthritis. Packing sucks for the reasonably healthy. Moving furniture sucks for anyone who hates carrying things. But for us, the chronically ill, it’s like a walking nightmare. We never know if we are going to be having a low pain day, or if our bodies will be in a cooperative mood.

Today I’m in relatively low pain as I had an infusion of Infliximab yesterday. But I haven’t been sleeping well. Or really, not at all. My eyes feel like they have a nasty film over them, and I want to sleep, but my body just won’t let me. It’s been like this for three nights. So, unfortunately, today is going to be a rough one.

But as you all know, I am an eternal optimist and strive to see the good in things. Like the fact that after being sick for six years and never really having any home support, I will finally have some. My mom and I have made the bold decision to move in together. I say bold because we both have dominant personalities that can clash at times. But when we are good, we are great. And I think we will be ok.

This won’t just be helpful because someone will always be around, but also because my mom knows my complete medical history. She can see the signs of my symptom flaring and is very understanding when I’m struggling. Plus as an added bonus, she will get to live with someone she knows and likes, as opposed to strangers.

We are moving to an area close to my main hospital. Minutes away from the emergency department for one of my routine issues. I was in the hospital three times just in the last six months!

So today, despite my exhaustion, I am up and dressed, and out in town at my fave breakfast place. Having the good American coffee and my cinnamon roll and I look forward to the new changes ahead of me.

Why is support such a hard word to comprehend?

I’ve been thinking a lot about support recently.

We, the chronically ill, think about it all the time to be honest. We lay in our beds, or sit uncomfortably in our chairs, just wondering when we will have enough.

The ladies in my support groups get it. We can talk all day about the lack of support we get from our own doctors, friends, family members, even spouses. Some of us have been sick for many years, and yet we always are surprised by the painful sting of the lack of understanding around us.

And it’s not like our disease is uncommon. You can find a wealth of information online regarding the disease and its symptoms. Rheumatoid Disease is unfortunately common, I know at least four other people with varying stages of it. So, I find it fairly ridiculous when I’m faced with comments from people I know, saying “Oh I don’t really know much.” Yet, these are the same people that feel the need to lecture me on how I could be cured if I started yoga and went gluten free. *insert eye roll here*

Just for the record (in case you’re a new reader), I have tried so many diets, workout routines, and herbal treatments. I’ve tried acupuncture, CBD oil, vitamins, spiritual healing, magic moon rocks, I mean I could go on for ages…

When you are as sick as I am, trust me when I say this, you will do anything and try anything. I never asked to be sick, this wasn’t in my life plan. Do you think when I was young I dreamed about one day being 37 and unemployed? Do you think I imagined dealing with pain day to day that was so bad that most medications in the world don’t work for me? Do you think I hoped to have such a debilitating disease that it scared away most men in my life, leaving me often single and lonely?

No. The answer is no.

I have tried everything in my power to find something, anything, that would work. So, once again I am here pleading with people to not be bad friends to your sick friends. They don’t need your judgement. You will not and cannot ever understand what they go through day to day, unless you’ve experienced it yourself.

The best support is just being there. You promise to show up, then show up. If you promise to listen, then listen. Be supportive by understanding that what we are going through is something difficult for us. That we didn’t ask for this life, but that we struggle through it every day. And we want to be better.

A women in one of my support groups is realising that her husband is not the man she thought. He is very unsupportive of her struggle, and instead of trying to uunderstand, he checks out. This is not the support we want or need. Spouses and family members may have it the hardest, it’s true. They see us at our most vulnerable, at our weakest moments. The best way to support us through that is to just BE THERE. Don’t make it about yourself, your needs, why it affects you. We know it affects you. But we need you to be strong for us because sometimes we can’t be strong for ourselves.

This last month was a hard one for me. I was in the hospital for pneumonia, an ailment which I’m still recovering from. During the worst of it I cracked My ribs on both sides from all the coughing. It has been a hard month of pain on my body, and a very slow road to wellness.

Because of the multiple hospital stays I’ve had within the last six month, my mother and I decided to move in together. It seemed the best way to give support to each other. We move this weekend.

Now obviously I don’t have to tell you how painful it is to move with broken ribs. Packing has been a nightmare. The last two times I’ve moved I was in a romantic relationship. Now that I am single again I am reminded how hard it is to do things like this without the support of a partner.

So, I took to Facebook and asked if any friends could help me with the move.

I was shocked at the lack of response. During the best times I’ve always had close friends offer help if I need it. But when I call in that offer? Crickets…..

At the same time, a friend who I don’t know very well, stepped up. Not only offering her help, but also that of her partner. It’s times like these when I feel my faith in humanity gets restored bit by bit.

But I’m still disappointed.

I am a giver. I will give and give until I have nothing, if only to ensure the comfort and well being of others. I know this about myself and I know it has been overly taxing on me before. Especially in the midst of me living day to day with the illness that consumes me. But I will always offer help, and give whatever I can. That’s how I was raised.

It’s taken me many years to realise that not everyone is the same. Some people take. Some people are only present when it suits their needs. Some people are flaky. And honestly, some people just don’t care. And it can take you a while to really figure that out for yourself. I’m 37 years old and I still hold on to the hope that everyone cares the same degree that I do.

I’m an optimist, what can I say?

I guess the point to my litany is to be self aware. Be supportive to those who need it. Be a good friend, spouse, family member. Give what you can, not just take. Try to understand what it’s like to walk in the shoes of others. Listen. Care. Be.

Protect Life

There have been many moments across these years of sickness that I have wanted to give up.

They hit me especially hard when I am in hospital and feeling at a loss. There in the dark of night, bound by my illness to a hospital bed, the thoughts creep in. They ask if I’ve had enough. They wonder why I haven’t given up yet. They remind me how very tired I am.

I have looked back at the darkness countless times and felt so alone. It’s true, I tell the dark, I am so tired.

But I always find my way to the next morning and continue living with the illness, living with this disease.

Last week, I had one of those moments. Laying in a dark hospital room, tears streaming down my face as I looked into the darkness, asking why I had to go through such pain. But yet again, I saw myself through the dark and woke the next day, still sick, but determined to live through it.

I often get asked how I get through my life without being depressed, people confused by my cheery disposition. Please don’t make me out to be a hero. You have not seen me at my darkest moments when I have had enough. You haven’t heard my conversations with the dark when it pleads with me to let go. You don’t know what I go through on the inside so that you may see what you see on the outside.

I have moments where the cool and quiet dark looks so very tempting. A place void of pain.

But every single time I see what my life could look like one day when the light shines in. Maybe one day I will no longer know this pain. Maybe one day I can live a life I’ve dreamed of.

That is enough of a reason to protect life, even when your own body is out to destroy itself.

I protect my life to see my dreams one day come true.