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.

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.

I still don’t understand

I grew up with Disney, and fairytales, and romance. I grew up believing one day my prince would come and sweep me off my feet and save the day.

In my twenties I quickly learned how silly these concepts were. That Disney wasn’t real, that fairytales were rare, and that there was no prince waiting on a white horse.

In my early thirties, I woke up one day with Severe Rheumatoid Arthritis. In the six years that have passed since then I’ve learned that my body wasn’t made for romance, fairytales, and dreams come true.

I don’t know what the meaning of life is, or why we are here, and what we as humans are meant to do. But I’ve come to realize that I my body and mind were meant to endure colossal amounts of pain.

Pain from the diseases in my body that won’t quit multiplying. Pain from cancers that won’t give up. Pain from being destroyed from inside out. And the pain from being constantly let down by those who don’t stay.

If my body was meant to endure such stress and pain, why give me a heart and mind that is so vulnerable to the human condition?

Why let me know sadness and sorrow, heartache and loss? Was the physical endurance not enough for one person to take? Must I feel the destruction of everything inside on such a monumental level?

I don’t understand why I was made to experience so much pain. I don’t understand. I don’t understand.

No one can do what I do

Today I was on a video chat with my dad and he said something that has really stayed with me.
We were talking about my disease, “the gift that keeps on giving”, and how despite the odds I’m always optimistic.

Yesterday I got out of the hospital again. It was my second hospital stay in two months, not a great average for someone like me.
In September I was in the hospital for six days, with an esophagus complication that was never really resolved. In those six days I developed a cold that I still have, and blood clots in my arm from a perforated vein via IV insertion.
The cold is annoying yes, but the blood clots ended up being a real shit. I had plans to go to a friends wedding in California, just a few weeks later, which ended up not happening.
My dad has planned to pay for my tickets but the clots caused him unease and he reneged on our deal. (I later found out I couldn’t have gone anyways due to not being able to fly with clots in my arm.) Unseen problems that turned into a big mess. Fairly sure I lost a friend or two over it. The ongoing cost of a disease I didn’t ask for.

Early Monday morning I woke up with a sharp pain in my right thigh. It was a confusing place for pain in my body to be, as it wasn’t near a joint. Rheumatoid Arthritis attacks the flesh around your joints, but this felt like someone was slowly sawing off my thigh bone.
When the pain became unbearable I took myself back to the Emergency Department. This time, unbeknownst to me, I had a clot in my leg. A very large one, deep in my thigh, known as Deep Vein Thrombosis (DVT). This was a serious matter as if the clot broke it could travel to my lungs or brain and I could die instantly.
After many tests and overnight observation, it was concluded that I must take twelve days of self injections in the belly (ouch!), followed by three months of blood thinners. No flying for me anytime soon..

Now out of the hospital, and limping around on a cane, I’m packing up my room to move this weekend. An unfortunate overlap in my current reality. I took a break and called my Dad on What’s App to check in and update him on my status.
After I told him about my hospital stay, the medication options available, and my recovery time, he looked stricken. I told him not to worry, I’d dealt with bad before, I could do it again.
He said “You’re right. No one else could do what you do.”

Huh..

That statement has really stayed with me.
“No one else could do what you do.”

It reminds me of a conversation I had with my partner the other day about ‘reality’. (We’d been watching American Gods, a show about the unknown of our world, and the idea of creating your own reality, your own fate.) I asked him if that were true, then why would I create a reality in which I was always in pain? Seemed a bit strange for someone to want to go through that on purpose.
It was an odd show to be honest….

That conversation stays with me too. Coupled with the notion of “no one could do that but you”, I’m left wondering.

People have told me before that they didn’t know how I could get through the things I have. Didn’t know how I coped with the pain, the depression, the unknown fate of someone with an incurable disease.
And I think about it too.
I think about it a lot.

When I was a kid I was such a wimp. Paper cuts would end in tears, a scraped knee would be the end of the world. I couldn’t lift weights like others in high school during PE. I wasn’t a very physical person at all.

Now it’s been almost six years that I have lived through pain that most couldn’t conceive. Bearable pain that I live with daily would send most people to the Emergency Department. I live with things that I never imagined I would have to. I’ve been in hospital more times than I can count. I’ve experienced heart attacks, survived lymphoma, survived cervical cancer, and broken several bones from hugs.
I live with Rheumatoid Disease, Osteoporosis, Fibromyalgia, Lung Disease, and Lupus, daily.

“No one else could do what you do.”

Maybe he is right. Maybe they all are.
I may not have been ‘born for this’, but I live with it on a level that many could never conceive.
Because they will never see it on my face. I wear my Disease like a smile on my face. I stay optimistic, I stay positive. Because I have to.

No one else can do what I do.

little by little

I was looking through #quotestoliveby on Instagram tonight and came across three small words.

“little by little”

I’m sure that this is probably a mantra for many, as it could encompass so many aspects of life. It might have been written to encourage people to strive for their goals, to not give up. Maybe to save their pennies, and go for that dream vacation. Or keep chipping away at their education, until they’ve succeeded in their dreams.

I used to love seeing quotes like this. I’d save them to my quotes board on Pinterest. I even contemplated getting some of them as tattoos, so powerful a message they were, I wanted them as a permanent reminder.

But tonight I see these words and they don’t speak to me as they once might have. I see “little by little” as a reminder of my mortality. I see it as my disease chipping away slowly at my body from the inside out.

Little by little my bones grow brittle and break more often.

Little by little my fatigue consumes me to where I wonder if I can get out of bed again.

Little by little my hair falls to the floor.

Little by little the drugs fail and I wonder what will be next if I’ve already tried everything.

A lot of people have commented on how strong I am about my disease, how in control I seem, how optimistic. They don’t realise that this is the mask I must wear, my uniform. Because if I share how scary it is to not know when the end is, then I’m being “dramatic” or “looking for attention”. No one wants to hear when the chronically ill are suffering. It’s a nuisance, something that should be kept to themselves. So we do. We keep it in. We become experts at the “I’m ok”.

But there are days like today, moments where the gravity of everything collapses our resolve. It might be a song on the radio, or a comment someone made at dinner, or that moment when we look in the mirror while washing our hands. Everything we hide from everyone, including ourselves, shatters. We remember what we are going through and how bad it is.

So tonight, when I read those three words, I remembered that little by little my body is dying. And that just sucks.

Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

Why can’t I have the cheesecake I ordered??

This is my first post in a few months… Mostly because my life really hasn’t been that exciting. Life with chronic illness gets like that sometimes. Our pain rises and wanes, we go through slow, inactive periods, etc.

Since its been awhile, you may be expecting a typical rant of hating the healthcare system, wishing doctors had better bedside manner, or the unending disbelief at how people treat the disabled. But, this is not the fruit I bear today. Today I want to talk about false advertising.

Now we may not realise it, but false advertising is EVERYWHERE. It takes a keen sense of snooping out the bullshit that the world is dishing out these days. Not just on that $236 eye cream made from expensive japanese fungus that ensures you’ll look like a 12 year old if you use it everyday for 3 months, cause anyone who falls for that is just asking to be scammed.

How about those medical commercials that tell us if we use this new biologic we too can look like the model they hired for the commercial, hiking up Everest like it’s nothing. I know Big Pharma is trying to sell some drugs, but come on. I’d like to be sent the file of every woman who took chemotherapy for a year and then decided to be a cross fit instructor because she’s cured.

I know I’ve covered this before, but recently I dealt with false advertisement, and it all came rushing back. I was at a restaurant this past Monday, and was perusing the dessert menu when I got excited. It said they had “American Cheesecake”.

Now this may not seem like a big deal to most, but I live in New Zealand now, where “real cheesecake” doesn’t exist. They make the unbaked version here which is more like a mousse. Im not saying that’s a bad thing, it’s just not MY thing. I love baked cheesecake. It’s firm, creamy, and always has a delicious buttery crust. So, when I saw American Cheesecake on this menu I was stoked. Of course I ordered it. It arrives….

(Insert exasperated sigh here)

WHY YOU LIE TO ME MENU???!!

What appeared on the plate in front of me could maybe have been identified as flan… but we would really be pushing it.

•No crust.

•Weird custard texture that tastes and feels reminiscent of hospital grade pudding.

•Very odd gelatinous layer on top that tastes like melted Lego

I was OUTRAGED. If they wanted a creative and inviting name they could have gone with anything. Why lie to me and say American Cheesecake??? Just say ” this is our version of what smelly gym clothes and a pudding cup would taste like if they had a baby”.

FYI- I think one of the worse disappointments in the world is ordering a dessert and it ending up being awful. This coming from someone who lives with chronic illness daily. You don’t mess with dessert.

RAGE!!

Four days later, I’m still stewing about it, AND I still haven’t had any goddamn CHEESECAKE!!

Hmm, I guess this did end up as a rant after all…

Here’s the thing… I’ve been sick for 5+ years. I’ve gone through things with my body that most couldn’t possibly imagine. There have been months where getting out of bed was akin to willingly cutting my own leg off with a chainsaw. I’ve worked at a desk when most would have been in an emergency room. When you become chronically ill, you learn to live at a level most would deem insane and impossible. We do it because we must. Or we wouldn’t be alive at all. So…

Moral of the story:

Don’t falsely advertise to the chronically ill. We don’t always have much to look forward to in daily life, so don’t make it worse lying to us!