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.

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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!

Transformation

It’s been almost two months since I made the huge decision to quit Prednisone, a steroid that I have been on for five years. Five years of slow but sure weight gain. Five years of my body using the drug as a band-aid in attempts to mask my pain but not help it.

There have been times in the past two months that I’ve seriously considered going back on it. There have been moments where I realized what a strong band-aid it had been, keeping me more mobile when I was on it than I am now.

But then there are days like today, where I look in the mirror and see my body’s relief at being able to lose what it had gained. I may still have pain, I will always still have pain. But at least I got my body back.

And that’s good enough for me.

Why social media is crippling me mentally (a rant)

We live in an age now where everyone is addicted to social media, and the majority of life is connected to the internet.

When I was growing up, if I wanted to spend time with friends my mom would drop us off at the local pool, or we would go out and climb trees, play hide and seek, or play Monopoly. Thirty odd years later and spending time with friends means playing video games together, or going to a friend’s house where you both get out your tablets and ignore each other while sitting three feet apart.

I walk past restaurants and a family of four all have their phones out, addicted to checking social media and taking pics for Instagram and Snapchat, and ignoring everyone else at the table (not that anyone else would notice). I had coffee at a cafe the other day, and after paying I was told not to come again (as I’d have expected from the past), but to “follow” them on social media. Um ok…

Why does any of this pertain to being chronically ill you ask? Just this, in an age where addiction to the internet and “having to know everything” is commonplace, the world has lost its common courtesy. Let me explain…

Remember when it came out that Lady Gaga was chronically ill? There was an article about it in Arthritis magazine, leading many to believe she had Rheumatoid Arthritis. As a fact, she does not have RA, she’s got Fibromyalgia, a completely different disease. But following all the online sharing about how amazing she is was a slam against the rest of the arthritis community. Comments like “If Lady Gaga can push through the pain, why can’t everyone else?” Or, “Obviously she can handle it because she works out so much”. And my personal favorite, “You’re just not trying hard enough to be well”.

What was equally frustrating was if anyone did any real research regarding it that would find that Lady Gaga has in fact cancelled shows because of her disease. But that’s not the front social media shows us. They show someone “chronically ill who’s winning at life”. Thank you internet, for making the rest of us look like assholes. Like not making any comments about how her abundant wealth could afford such a lifestyle with concierge doctors, personal trainers, nutritionists, and cooks. I could maybe be winning at life if I had those too, thank you very much.

Then you’ve got those great internet ads that pop up telling you anyone with moderate to severe RA can live a normal life if they take this [insert drug here]. They show thin models lying on boulders at the beach with not one crippled knuckle in sight, telling the world that they’re basically cured.

God, that pisses me off!

Could we have a realistic commercial just once? Show an over weight woman (cause we all gain weight on those damn drugs), who has maybe just had a knee replacement, and the drug she’s tried has helped her be able to do household chores like laundry again. THAT is a realistic RA drug commercial.

But no one will see that commercial, because that commercial will never be made. Which means that all those healthy people who don’t have RA will see these ridiculous commercials with thin and fit apparently chronically ill people, and wonder why their friends with RA don’t try hard enough. They picture us sitting around all day, eating and watching tv, living off disability, and not attempting to get better.

Then they see those shareable links on Facebook about how people living with chronic illness would be fine if they just ate vegan, or tried cannabis oil, or joined a gym, and they send it to us with a ” have you looked into this?” Everyday. Every single day, I have an email, or a message on Facebook or Instagram, with a link.

Not one day goes by that it doesn’t feel like a slap in the face. Just because there’s a share link on the bottom of the page, does NOT mean you have to click it. Just once, before you feel that uncontrollable urge to share your opinion on someone else’s health, please just think. Think for a moment that if you were ill and you’d done all you can to find a cure or a way to better your situation, would you like people who don’t know your situation to send you “tips” on how to get better? Because I guarantee you, you wouldn’t.

If you really want to help someone, send them a card -and no not a damn ecard -like an actual written card. Pick up the phone and ask how they are doing, if they need help, or how their treatments are going. If you see something online and you feel like you should “share” it, why not instead read it yourself, maybe learn something for YOU.

This rant may be starting to sound like I hate the internet, but I use my iPhone as much as the next guy. I like Instagram, and I enjoy talking to friends on Facebook. But I don’t use it to make myself sound superior. There’s a line that need not be crossed, that a lot of people like to speed over. It’s the “I read this online so I’m an expert now” line. And oh how I wish that people would take a moment and think before those words come out, or that share button is clicked.

Can’t we all just take a moment and be humble. Put down our electronic addictions and read a book, have a conversation, and just be.

Taking My Body Back

It was just over five years ago that I woke up that fateful morning, attempting a good stretch, but screaming in pain instead. That first morning when I basically woke up with severe Rheumatoid Arthritis, my life changing forever.

It was just over five years ago, when finally being referred to a Rheumatologist, I was given Prednisone. I thought my worries were over with the miracle drug that took away my pain so quickly. Only to learn how horrible and painful my life was still to become.

It’s been five years and I’ve taken almost every drug on the market for Rheumatoid Arthritis. I’ve tried several rounds of TNF blockers and biologics, in pill, injection, and infusion form. And all the while I stayed on Prednisone. Five years and pounds of weight gain.

I tried to get off it a few times, but my doctors wouldn’t let me. They told me I needed it too much, or that it would make me sicker. Sicker, really? From Prednisone alone I developed severe Osteoporosis and Lymphoma. How much sicker could I get??

Well, two weeks ago I decided enough was enough. Sick of the weight gain, and the pain that I still have despite being on damn Prednisone for FIVE YEARS.

I didn’t consult a doctor, I did my own research, and I took back my body from those who thought to rule it. No one knows my body better than me. I did my own taper schedule, and I successfully quit Prednisone.

And next time they decide to tell me what I can and can’t do with MY BODY, their words can go to the same place my unneeded Prednisone went…with a flush down the toilet.