My 2019 tumble

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Definitely the first, hopefully the one and only.

Falling is one of my greatest fears. With permanent joint damage in my wrists, the thought of forcefully propelling all my body weight on to them is terrifying.

In the grand scheme of things, this wasn’t a bad fall. You’d think I would hurt myself on a house project but no, I was quite literally taking out my trash and on my way back in, tripped over my own dang feet.

I tripped, stumbled a few steps while trying to catch myself, and finally landed on wrists and knees on my concrete porch.

And…I was fine. Wrists were sore for a few minutes but they caught me. Knees…

A tad bit banged up but again, only tender for a few minutes.

I was lucky. Very lucky. And strangely, I was also pleased.

An issue I’ve been struggling with a lot over the past few years is that I don’t give my body any credit. For anything. I don’t trust it. I think it’s incapable of doing lots of things and even basic things like keeping me safe.

I’m certainly not saying that I WANT to fall. Definitely not! But I’m just so tired of being scared of my body letting me down again.

I think that’s one of the hardest things of being stable- fear. Fear about a lot of things but for purposes of this conversation, fear that my body is unable to perform basic functions.

Relearning what your body can now do, when you’re not currently struggling with active symptoms, is hard. It’s funny, I pushed it a lot when I was struggling…kinda like an eff the man kinda thing. And now that the symptoms are gone, I’m all mama bear. From an intellectual level, I think it’s perfectly reasonable about being mama bear for say…skydiving. But perhaps not so reasonable to be mama bear and say no to things like a hike with friends. Which has happened.

I’ve always had anxiety issues. Team Zoloft! (Not an ad lol.) But it’s been very surprising that I’m actually MORE anxious now than before.

I’m trying to find inspiration and security in little things, and this tumble has actually given me some perspective.

But let’s not do that again!

The Money Pit: October update

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I have three strikes against me when it comes to fixing up my house.

1. What I lack in skill, which is quite a lot, I make up for in confidence.

2. I don’t let RA hold me back, even when perhaps it isn’t the best idea.

3. I was raised by people who are cheap and don’t like paying other people to do something unless it’s absolutely necessary. I embrace the DIY to perhaps an unhealthy extent.

So with that said, I figure I’d give the highlight reel of what’s been happening to my house over the past few months.

The Front Porch

I decided long ago that the former owners are assholes due to the lack of regular maintenance and half assed efforts in multiple areas. No exception with the front porch which had paint peeling off in sheets due to multiple coats of the wrong type of paint and also paint all over the front brick which drove me crazy.

This picture doesn’t do how bad it was justice but look at that line of paint all the way across the front bottom brick. Like nails on a chalkboard to me.

Even if you don’t have RA…if you ever catch yourself wondering ‘should I do this myself or pay someone to pull the sheets of paint off, sit for hours at a time and scrape concrete with a razor blade, only to have to order multiple drill attachments to get paint off of brick before I power wash, prep, repair and paint everything?’

WRITE. THAT. CHECK.

I started in April. I admittedly had to take some time away from it due to the heat of the summer but my hands, wrists, shoulders and knees slowed me down too.

Also, paint stripper removes toe nail polish. Oh, I wasn’t supposed to let it touch my skin? LOL. That explains some dryness issues I’ve also had.

This is where we’re at currently, just waiting on the right weather to throw some paint down and then I’m done. Six months later.

I thought this would be a two week project.

Dining Room/Kitchen

Repainted the ceiling and walls of my kitchen and dining room. Well, almost all of it. This wasn’t too bad except I need someone to pull the frig out for me so I can paint that last section of wall. Gals with RA in their wrists shouldn’t be pulling refrigerators around!

Before

After

Frig Line

Guest Room Redo

This was my last big room with the awful jaundiced looking paint. Like all the other rooms, I had to repaint the ceiling bc ‘what were the previous owners thinking’ when they did a horrible job painting that horrible color all over, getting it all over the ceiling and leaving no ceiling paint to match. I realized in the first room, they actually painted the ceilings off white so painting them true white makes it even brighter.

Before

About 10 seconds into ceiling paint, it became very obvious that I needed to remove the old paint. Obvious meaning it was coming off in sheets. Good news is that it took less than an hour to get it down, see the old (now dry) water leak they painted over without remediation the surface so of course the paint didn’t stick.

This is the moment where I realized I wasn’t painting that night.

Two coats of Killz and one coat of ceiling paint later, we have a functional ceiling.

But alas, spending several hours with my arms above my head wasn’t great to the RA. But at least my room looks better! It’s not 100% done but it’s little details now left to finish.

The Yard

So. Much. Mulch.

I also recently aerated, spread lime and fertilizer and overseeded. Oh who am I kidding, I outsourced that part. But I have been masterfully wrestling sprinklers every morning and hating every second of it. I’ve also somehow become ‘that neighbor’ who wanders outside in pajamas with coffee on a Saturday morning to stare at dirt and whisper good tidings of germination to my future grass.

Up next? My front yard is fairly controlled. My back yard is the evil twin. So I’m walking the yard with my landscape architect (who is also my brother for the reasonable price of free lol) soon to put a plan together. New front door. Make my outdoor storage room more functional and organized. Repaint my bedroom. Come up with a plan and budget to gut my bathroom. I cannot wait to take a sledge hammer to my ugly vanity.

Sorry for the picture overload, I’ll update more as I continue working!

It’s a hard knock life

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One of my all time favorite movies will always be Annie and one of my favorite moments of that movie has always been the song It’s A Hard Knock Life.

Someone asked me recently if I ever get tired of having to constantly put thought into managing my life and RA. It caught me off guard because I don’t think I’ve ever really thought about it. My immediate answer was YES! SO MUCH RESPONSIBILITY! And it immediately reminded me of that song.

Orphans making beds, running to mop floors, sliding down stairs to clean rails, dancing across beds to smuggle a girl out in the laundry…well maybe not that last part.

Me making all my food at home because I’m sensitive to certain ingredients and limit additives. Me having to plan stretching and range of motion exercises into my morning and evening schedule or I pay for it. Me scheduling my work week and work travel in a way that I am able to at least get 8 hours of sleep and at least one ‘down’ day. I could go on but I think you get where I’m going.

Living with RA, even though I’m stable, can really really be a hard knock life.

I think that’s true of life with any chronic illness.

I’ve found that, for me; I’m able to successfully manage my health but it does take a lot of work, a lot of planning, a lot of finagling, a lot of prioritizing your health over things you’d rather be doing.

And sometimes, I’m just overwhelmed and sick of all of that responsibility.

Sometimes, I even rebel.

But when I do, I pay for it and have to work twice as hard to get everything back to baseline.

I really really wish I could smuggle myself away from RA in a laundry cart.

A letter to my newly diagnosed self

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My intention was to write this as a part of RD Blog Week but life happens and I got slammed after writing half of it. But the prompt really spoke to me- advice I’d give to my newly diagnosed self- because I’m often asked to give advice to others but have never really thought about what I would’ve wanted to hear if I could pull a Back To The Future on myself.

So power up the Delorean and let’s see if I can send this letter back to 2005.

Dear 2005 Amanda,

First things first, stop googling. Seriously. Stop. You will learn nothing productive there, you will actually hear a lot of things that may or may not be true and certainly exaggerated. So step away from Google.

Second. That jerk rheumatologist? Drop him like a hot potato. You deserve to be treated with compassion; you should never feel belittled for asking questions.

Third. Find your people. You will not start feeling better, both physically and emotionally, until you understand how to advocate for yourself from other patients that 2019 Amanda waited 3 years to find. Find them. Force them to be your friend. Learn from them. They will help you get your bearings when it comes to making informed decisions about your care. Feeling like you have a voice and can provide that feedback to your doctor will make you feel SO MUCH BETTER across the board. Watch their examples closely because you will learn that your greatest fear doesn’t have to be true-that having RA doesn’t mean that you won’t have a beautiful life- and that YOU are STILL the one who gets to determine that.

Fourth, and perhaps the most surprising for you to read, this won’t be the worst thing that ever happens to you. Read that again, internalize it, make it your mantra. Even more surprising, this will actually end up being something that gives you opportunities, introduces you to lifelong friends and makes you a better human.

And finally, you need to give yourself more credit. You are stronger than you think. Don’t underestimate your ability to make these lemons into a vodka lemonade.

But please don’t take 3 years to realize all of that. It will feel like lost time.

You got this, girl.

2019 Amanda

Adventures in being fair (or TNF inhibitor side effects)

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When your RA is stable, you make time to handle all the other things. Or at least I do. Not that I put them off at other times, it’s just I have more time and emotional bandwidth to stay on top of things.

Did you know that some of our medications can increase the incidence of skin cancer? Because RA is the gift that keeps on giving. Or perhaps because, like many of my family members, we are not a people of the sun. I am pale like a vampire.

Or maybe a bit of both.

This past week, I had my third basal cell carcinoma removed. From my face nonetheless. This is my second one on my face. Enough with the face already!

Because it’s on my face, insurance approved me to go to a plastic surgeon for Moh’s surgery. Unlike an excision, which is where they just cut it out, Mohs surgery removes only a few layers at a time to minimize scarring. They send those few layers down to radiology to confirm if they got it all or not while you wait with a gaping hole in your face bandaged face in the waiting room.

If they didn’t, they take a few more layers and repeat until radiology gives you the all clear.

The nurse asked me if I wanted to see it before they stitched me up and I asked her to hold a mirror 10 feet away. The hole was about as wide as a dime. From what I saw at a distance with no glasses/contacts, I said HELL NO DON’T COME CLOSER.

I wound up getting 4 internal stitches and 8 external. I had a minor freak out when she said ‘I need to shave your head a bit.’ Ladies, that is never what you want to hear, right? But she shaved a tiny bit so that she could stitch it up in a way where a lot of the scar will hide in my hairline.

That is basically the only reason I’d ever be ok with someone shaving my head. She finished up, put a super attractive pressure bandage on me and sent me on my merry way.

So I didn’t see what the final result looked like until the next morning when I unwrapped it.

Because I’ve had this procedure before, I know what to expect this time around aka I didn’t freak out when I finally got to get a look at it the next morning.

2019 (if you look up and to the right, you can see the faded scar from my last one)

2018 (also shows shoulder excision, redness is contact dermatitis from sutures)

Last year, all I could think was I HAVE A HARRY POTTER SCAR! How will this ever fade? I almost cut bangs y’all. My friends thankfully intervened on that.

This year’s stitches look much better from last year. And I know it will fade significantly.

I get the stitches out in another week and then *hopefully* this is it for awhile. It’s an easy, painless recovery.

Y’all. I know we deal with a lot but please get your yearly dermatologist scan. My spots weren’t moles, they actually looked like small scratches. It’s easy to remove but can be very disfiguring if you let it go. And with basal cell, there is no follow-up once it’s removed.

And if you’re fair like me, wear your sunscreen. And possibly a sombrero!

2019 Advocates for Arthritis

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I got back the other week from a whirlwind trip to DC with the ACR. I’ve been participating in the American College of Rheumatology’s annual Advocates for Arthritis event off and on since 2009.

If you haven’t heard of it, check it out. I look forward to it every year but honestly, it also kinda breaks my heart that I am selected to attend every year. The goal of the program is to train new patient advocates; that I am chosen year after year and that I’m typically the only patient from NC makes me think that I’m also usually the only NC patient who applies.

NC patients, as much as I love this event, I’d LOVE for you to get me wait listed so you can have this experience!

Anywho. I flew in on Sunday morning and had some time to play. I walked to the Mall…

And then I tried a Lime scooter for about a minute/100 feet. My feet were starting to hurt because I wore sandals vs tennis shoes but I realized real fast that I had no business riding a scooter in bad shoes, no helmet and nobody to call 911 when/if I took a tumble. To the people who witnessed me careening out of control for about 100 feet, you’re welcome.

I met up with my Philly sister, Kelly, for a nice dinner and then hit the sack early.

Monday, we met our teams and got trained on the issues we were there to discuss.

I was paired with a rheumatologist, a nurse educator and three rheumatology fellows.

The issue training is always fascinating to me, I have learned a lot over the years about different aspects of legislation that affect the community. It’s been especially interesting the past few years as we’ve had to understand how to adapt in a highly partisan environment. Read: find a middle ground.

Our talking points this year were:

-a clear and transparent step therapy exception process

-addressing the rheumatology workforce shortage

Our group met after the education briefs and made a quick plan of who would speak to what, who had personal stories, who may have had previous interaction with the member we were meeting.

The next morning, our day started with a 9:30 meeting with an NC Senator. We were booked solid until lunch and then we had a 3 hour break.

If you’re ever in DC and want to go into the Gallery, you have to have Gallery passes. Your local offices can give these to you, there’s no cost. So for part of our break, we went into the Senate Gallery for awhile. It was a slow day and kinda boring but I was happy to sit, rest my joints and enjoy some taxpayer funded AC.

All in all, a great trip! I hope to either be there next year or live vicariously through whichever NC patient decides to apply and bump me!

My sweet Molly

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It’s been a good few months health wise but a very very tough few months emotionally.

On April 26th, in the middle of a rainstorm that came out of nowhere, my sweet sweet Molly cat crossed the rainbow bridge. I’m not religious but rain has always been comforting to me and I don’t think it’s a coincidence that it came out of nowhere to help me help her cross over.

She was almost 17 and had battled end stage renal disease like the magnificent beast she always had been. I honestly believe she knew what was happening and I also believe she hung on as long as she could because while she was ready, she knew I wasn’t. The sweetest baby until the end.

I’m ok. I was really worried that I would completely lose my mind. She wasn’t just a cat to me- she was my rock, my emotional support, my truest friend, and she knew everything I went through. It’s been rough but it comes and goes. I’m so incredibly sad that she’s gone but I’m even more thankful/grateful/blessed that she happened.

I had her cremated and I take a lot of comfort in the fact that I think she’s watching over me, smirking that ‘see! I am allowed on the dresser.’

No plans to get another at this time. The only cat I want is her right now and I feel it would be unfair to a new pet to bring them in and not be excited about them.

For now, I’m just trying to surround myself in peace and quiet. Lots of time to myself. Reading, yoga, meditating, walks. My house is really clean right now y’all.

Just trying to give myself space to figure things out.