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Sunday, October 30, 2016

#NewKanseyYellowBrickRoadTrip

I'm sitting on the futon in my dad's apartment, which served as my bed through high school and college. Now, at 31, I am once again sleeping on a sub par mattress, which my husband barely fits on, trying to get the rest I so desperately need.

That is not happening.

And now I understand why I was so goddamn tired all through college.

We are here- we made it the 1300 miles from Kansas to Jersey relatively unscathed (although completely rain soaked.) Now we are counting the days until our apartment will be ready and we can do the whole thing in reverse, only to sleep on a mattress on the floor (I broke the bed frame when we were taking it apart. I'm not even kidding.)

Like, broke it beyond repair.
That is probably the first thing that truly went wrong in this debacle of a move. Let me tell you all a story. It is a story not of romance or adventure. There is no sword fighting. There is no death (yet.) What there is, is a shit ton of anxiety, snapping, and Xanax. So. Much. Xanax.

So, yes, we broke the bed. Somehow the stupid box spring that comes with a Tempurpedic bed is too heavy, and while trying to lift it out, the weight of it snapped the reinforced side of the frame from the headboard itself. Stripped the holes. Not even bolts and wood glue can fix this Ikea beauty. But hey, at least it was a cheap bed frame, not the worst thing to ever happen to us.

The next day the movers came to pack our whole life away into the 2 ABF pods that we had rented. We were mostly prepared. OCD comes in handy for this kind of situation. I had lists. LISTS ABOUNDED GUYS. Checklists to follow. A list of all boxes numbered and entailing their contents for easy access later. We had already decided not to keep our couch- it was huge and super comfy, but would take up LOADS of room in the pod. When the movers got there, though, they swore it would fit along with everything else. And who are we to argue with professionals? We told them, "OK, if it will fit with everything else, go ahead. But we don't want it if space is going to be an issue." They insisted it would be fine. So out the couch went. Cut to two hours later when boxes and furniture are sitting on the sidewalk and they come in to tell us "We don't have enough room for what's left."

Now, I refuse to take full credit for this issue because they were the ones insisting the couch was fine- but I will take some blame, maybe, depending on how I feel at that moment. We hadn't finished 100% of the packing. Anyone who's done this a time or two knows that its easier to sift through what you definitely want and what can go once the already finished boxes and furniture are out of the way. I've never had to say it in the past, and thought it was implied that if a box was open, especially if it barely contained anything, that movers should ignore it, that would be my problem later.

This is clearly not a universal understanding. My bad.

We were able to consolidate a few boxes that were barely holding anything at the front of one pod, but they had packed everything so tightly that we couldn't get very far in. We still had to make tough choices. (When in doubt, throw it out.) Now we have almost no lamps, no vacuum cleaner, but we do have a couch and various other pieces of furniture we didn't want. Super.

We had them leave enough room for the mattresses, without actually packing them, that way we could still sleep on them the few days until the pods were picked up. If you've never tried to move a memory foam mattress and its box spring, count yourself lucky and run away from the situation if it ever presents itself. They are heavy and unwieldy. Partway through, I suggested we just leave it in the middle of the sidewalk and buy a new one when we got here. That idea was vetoed.

Hilariously, just as we finished getting the mattress into the pod and were about to close the doors, the guy who was picking them up showed up.  He asked if we needed more time, and we laughed and said no, he had the best timing on earth, we had just finished. Watching him load them onto the truck and drive away was the most relief I had felt in weeks. That was it- no more stressing about what would fit and what wouldn't (LOL, no there was more of that to come.) But at that moment, it finally felt like we were on our way to being out of the Midwest.
I'm not as good a friend,
I not only took this picture,
but I'm also putting it on
the internet.

The next day was when we were leaving, so now it was time to pack the stuff we had left into the cars. We were severely limited since in my car I would have a rabbit, two cats, and a human best friend taking up space.

Oh yeah, did I mention that my best friend flew in to make the drive with me? She is literally better than your best friend. She drove two hours to the airport in North Carolina to take a 6 AM flight to Kansas City to then spend three days in the car with me and the aforementioned menagerie, to then fly from New Jersey back to North Carolina where she would then drive two hours back home. Beat that, interwebs.

Day One
GTFOing Kansas City
The initial plan: Hubbs and I drive both cars to the airport, pick her up, and hit the fucking road by 10 AM.
Reality number 1: I picked her up from the airport, went back to my work one last time for a last goodbye because I'm co dependant and can't let go, then went home and frantically tried to shove all of the shit that was left into the two cars. Now, when we moved from North Carolina to Kansas City, my husband was already there working, so I dealt with all of the moving stuff by myself- this was the first time my husband and I had to actually live through a cross country move together. And let me tell you, I am a bitch. I get snippy, I assume you can read my mind, and I will take zero blame for last minute disorganization because I had my shit together so well right up until that last push. But it honestly is a group effort to be as disorganized as we were, and so my husband and I had an understanding that no matter how rude or snippy either of us was, we loved each other and we weren't mad at each other, we were mad at the move.
But we had a lot more shit left than we thought, and with space limited, there was a lot of arguing about whether something should be tossed or if room could be made. it was a very stressful few hours.

Reality number 2: It was 1:30 when we hit the road, I still had to overnight our signed lease to the apartment people and he had to drop the modem off at Google. So it was more like 2:ish when we actually started the road trip part.

Initial plan: I used Roadtrippers to create an amazing trip full of fun attractions, fire breathing dragons, rabbits, reptiles, and corn mazes. I probably would have fit a haunted asylum in there too if we hadn't had Pickel's plane to make. It was a masterpiece that I timed down to the minute between each place so we knew how long we would have at each attraction, where we would be staying (I even made fucking reservations) and how long we would be in the car at a time. I. Am. Amazing.
Reality: We left four hours later than I initially planned which cut out a Rabbit Ranch in Illinois. Then, about two hours into the trip we hit a patch of rain that just happened to take up most of the Midwest (for the entire goddamn trip, by the way) which ruined the sculpture park and made the fire breathing dragon a no go. We still went to the Sculpture park. There was a giant eyeball, I couldn't NOT go. It was already dark, pouring rain, TONS of lightening, and still somehow super fun, despite the loss of a beautiful straightening job on my hair. (RIP great picture opportunities.)

From there we had SEVEN hours of driving to get to the hotel. We were not only severely behind because of our own doing, but the storm slowed our pace to a crawl for most of the trip, it was terrifying and we were pretty sure we were about to die for at least 75% of the drive. Being the optimists that we are, Pickel and I blared the soundtrack to Rocky Horror Picture Show because... we were pretty sure we were living it.

Getting to the hotel
Initial plan: get there at an ungodly hour, ask for a late check out, then pass the fuck out and ignore the world for hours.
Reality: we got there at 3:30 AM, they gave us the wrong room, we had to go back and have them fix it, so it was after 4 AM by the time we all laid down to go to sleep. By all of us I mean Pickel had one bed, Chris and I had one that we shared with the dog, the kitten slept in her crate covered with a towel, and Sydney the Strabismus Kitty wandered around the room growling and meowing her distaste for our choices until finally scaring the shit out of Pickel by sticking her face in her face causing her to jump and yell out, then going and curling up on the chair.

The next morning I was awakened at 7:30 by the kitten meowing (6:30 for my body), so I took her, her food, water, the other cat, and my phone into the bathroom and made them shut up for a few hours so the others could sleep. Because I rock. Also because I am the weak link of the driving team, and needed to make sure the others were in tip top shape for the day's driving.
I went down to the lobby to get some breakfast, and found that, somehow they put it away at like 9 AM and nothing was left. To their credit, though, the staff of the Days Inn was super nice and brought out cereal and milk for me along with hot water for tea, so that I could have something to munch on. Every person who walked passed me made sure I was comfortable, had everything I needed, and that the room was good. (You can see my review on TripAdvisor for more details of the stay, but overall if you need to spend the night in Dayton I would say this is a good budget choice.)

Day Two
Initial plan: Hit the road early on Thursday morning, drive over to Friendship National Park to take pictures in front of the sign, stop in Jersey Shore Pennsylvania because, why not, head over to Punxsutawny to see Phil, then coast to our hotel in New Columbia Pennsylvania to relax. It was seven hours of driving, not bad at all, and we would have time to casually stop into any places along the way that seemed interesting. (Side note: if you don't believe in a higher being- whichever you prefer- then I guess you would call this a coincidence. Chris' parents from NC were in Ohio at the same time for a reunion, so he was able to go spend the day with them. How the fuck does that happen? We didn't even know until the day we left.)

Reality: As soon as we hit the road it started raining. We forgot about Friendship National Park in our excitement about seeing Punxsutawny Phil, and by Jersey Shore PA it was raining so hard our entire outlook on life was "Fuck the world and make good with God because we're about to die."
Then enter Google Maps having some sort of Halloween fun with us. Or having a stroke, I don't know what happened, but it was not fucking funny, Google. While trying to get to Phil's Burrow, Google changed its mind and instead took us here:
Have you ever felt like Wes Craven was directing your life?
We ended up in front of some random ass farm with Google telling us our destination was on the left (only certain death was on our left.) It looked like a scene out of The Hills Have Eyes if it was placed in the Appalachians. I feel pretty confident that if a serial killer wanted to trap people, all they would have to do is hack into their connection to Google Maps and redirect them to that exact place, then offer to help them. Luckily, having watched horror movies like it was homework, we weren't about to fall for that and did not ask anyone for help. We GTFOed and searched for downtown Punxsutawny, which was another thirty minutes away. We were on the verge of giving up on poor Phil.

Chilling with BFF Phil
Thank god we didn't, because it was magical. It was 8 PM and dark by the time we got there, and of course, being a geriatric 100+ year old ground hog, Phil was asleep. But he sensed the presence of his best friend just outside his enclosure and woke up for some pics. Then, once we'd had our Phil (fill- get it!) he went back to sleep. We were giddy with excitement. Phil the groundhog had woken up for US. Because we were best friends now.

Then it was off to hotel number two- another hour away. It took nearly two hours in the rain, which ended up closing most of the towns we had driven through because of flooding. It was on the national news the next day, and we couldn't believe we were still alive. Thank God we were, because Hotel number two was AMAZING. It was a Holiday Inn Express, and we probably would have stayed another night just to enjoy it if we didn't have a plane to catch. They had a coffee and tea bar, so we made ourselves tea and went to relax in the huge room with 12 foot ceilings. They gave us a 2PM check out the next day, which worked perfectly with our plan. Pickel took a relaxing bath. I watched American Horror Story on my phone. 
Day Three
Pretty much initial plan AND reality:
We slept in the next day, then went and got some breakfast from the awesome breakfast bar. THEN was the highlight of the trip:
We dolled up in our Halloween Costumes (almost two weeks before Halloween) and drove over to Clyde Peeling's Reptiland. It. Was. THE BEST. Do it. If you are anywhere near it then make it happen because it was totally worth it. We paid $15 extra bucks to feed Aldabra Tortoises by hand and then got to pet and snuggle with them while they took pictures of us. Now I want an Aldabra tortoise as a pet. 
My new best friend, Al.
We learned a ton about all kinds of species, and got to walk among life sized animatronic dinosaurs,
as well as stealthily touching other animals we weren't necessarily "supposed" to touch. (If you don't want me to pet an Emu, then a couple of ropes is not the way to convey that message.)
         
After we left Clyde's we were going to stop at LeHigh Gorge Park to take in the views, but Google Maps once again had other ideas. This time it took us to an entrance to the part of the part where you could hunt (oh yay!) so instead we just took a beautiful drive through the fall leaves of the southern Poconos. By the time we got to the scenic part of the drive, the rain that had plagued us for three days was behind us and we had sunshine and bluebird skys the rest of the way. 


And now, we wait. We have reached the state of New Jersey, we are at the home stretch of this move. Soon I will be back in a home and be able to get a couple of Vlogs ready for y'all to watch.
I guess I should stop saying y'all now that I'm back in Jersey.



To see more pictures from the trip as I post them, search for #NewKanseyYellowBrickRoadTrip on Instagram or Twitter.





Thursday, October 13, 2016

I've been keeping a secret...

and it's a big one!  


We're moving!!
Everyone supervising the
offloading of the pods.
And this time it is for REAL. You may or may not recall (although why would you NOT recall the mundane details of my past?) that we thought we were moving in 2014, which didn't really pan out. Well, this time we don't have a choice. 
The pods are out front.
Our shit is in boxes.
My work is throwing a goodbye breakfast on Friday.
There is no going back after a goodbye breakfast. 

Aforementioned kitten: #CosetteTheIttyBittyKitty
This should be an interesting month coming up. My husband and I are packing up our dog, our two cats (oh yeah, I also forgot to tell you I got a kitten. I'll make a post about that.) and the Bunny and driving 1300 miles to New Jersey. THEN we get to stay with my dad for a month because our apartment won't be ready yet. In his one bedroom apartment. With another dog. 

It's gonna be SWELL, I am sure.

All joking aside, it is a super exciting time. Moving back to the East Coast is something we've wanted to do for a long time, land locked life is just not for us. And the stuff to do- I cannot wait to spend a good day wandering through the Museum of Natural History (but not the room with the life sized whale.) OHMIGOD and the FOOOOOOOD! (If you live in the vicinity of Ramsey, NJ and have never had Kinchley's Pizza you are fool and a charlatan.)

We just have to survive the next 4 weeks. 

For me that sometimes seems impossible. 

Last Thursday I woke up with my pain level at an 8 in pretty much every joint I own. Like, all of them. I left work an hour earlier that day because I needed to rest so that- guess what!- I could pack shit anyway. Because somehow the RA didn't get the memo. Actually, I think it did get the memo and promptly shredded it up and set it on fire. Such a bitch. 

Of all the situations I've lived through with this disease, moving is probably the WORST. ONE. I would like to introduce into state's evidence Item 1: the amount of energy it takes is INSANE. I, like so many of us, only have so many spoons to use in a day. And if I'm going to work then that takes spoons, which is not optional, then I have to come home and take care of the animals, which takes spoons that are also not optional. THEN I have to pack shit, which takes spoons that are now, no longer optional. So which spoons do I use for things like, working out? Reading? Taking a fucking shower?

Now, let me introduce into state's evidence Item 2: The Stress. With the capitol 's'. And we all know how great stress can be for a chronic illness. It's like RA's version of steroids. It feeds on it. And the more stressed I feel, the more pain I feel. And the closer to a possible flare I get. 

I've been using a Bullet Journal, which for those of you who don't know, is a new trend for people to combine the typical agenda, planner, and personal journal into one book that lets you have a comprehensive view of your days, weeks, and months. Follow the links to find out more, it can be a great way to cope with stressful situations like this. Thank God for this thing, because between the easy organization and the ability to "dump" my thoughts and feelings into one place I can easily look through later. I am OBSESSED. I'll write a post about that all o
n its own.

Anyway, that Bullet Journal is about the only thing saving me. That, and this time I'm actually WITH my husband, which was a huge problem the last time we moved across the country.

But before I continue rambling, I have more packing to do. So sorry for my abscense, things have been sort of crazy, but I will get back to you lovelies with fun stories from the next few weeks, I'm sure!
Muah!

Sunday, October 9, 2016

Hold, please.

Y'all are awesome for hanging in here with me despite the silence.  (I'm assuming there.  You may have peaced  out ages ago, but this is the lie I tell myself.)  I'm in the middle of another one of those crazy as shit episodes of "Life" and so I'll fill you in first chance I get.  In the meantime, it's pretty easy for me to update the Facebook page, Twitter, and Tumblr. Th one are your go to's in the mean time.

Kthxbai

Saturday, September 17, 2016

Dolla' dolla' bills, y'all!

That's what being sick really comes down to, in the end. So, what is the real cost?

You obviously want to have health insurance. Well, you HAVE to have health insurance. Unless you want to become intimate friends with the call center people at a collections agency. So that, at its cheapest is going to be $200 a month. But then, there's the deductible; how much did you end up choosing? Because that cost will be out of pocket. Is everything paid in full after you meet that point, or will you still have to pay 20% of the bill when you go to the doctor?
Maybe you went for the higher monthly cost and lower deductible, which also usually means less out of pocket after it is met, if any.

This is the expense people often think of when they think of being sick: your health insurance bill, your co-pays at the doctor, your amount due on procedures (if they've ever even had a procedure to realize that it has a different pay scale than a standard doctor's visit.) But there is SO. MUCH. MORE. to being sick.

Did you pick the insurance plan with the good drug coverage? I hope so, because this shit ain't cheap.  Well, that's not totally true, the ones that actually take care of my disease like Enbrel, those are fucking car payments every month without help; no worries though because your trusty, controlled substance Xanax is only $7.15. So you'll be broke, but you won't care as much. Groovy. Even with my insurance, my Enbrel would cost me over $300 a month. AFTER INSURANCE. That's how much the insurance cost me, are you fucking joking? Did somebody type the period in the wrong place and they just rolled with it after that? Nope. That's actually what insurance brings it down to. Without it can be upwards of $1000 a month. A. MONTH.
I take leflunomide every other day, which, if you're good at math (and most of us are pretty good at knowing how many pills should be in a bottle) amounts to a quantity of 15 for a one month supply. Do you know how much that costs me? $35. For fifteen fucking pills. This isn't a brand new drug, either. It was approved by the FDA in 1998, which in my head is like 5 years ago, but is actually almost TWO DECADES ago. Yet even as a generic, it has very specific uses and virtually no side scribing to force much cost prohibition amongst competition. So I'm paying more than two dollars a pill. (For diarrhea. That's the most noticeable thing it does for me, give me diarrhea.)
For the newer, still branded drugs the companies try to incentivize doctors and patients by offering co-payment plans. This is a godsend, provided the company still has a need to incentivize. So, the Enbrel that would cost over $300 after insurance comes down to $10. TEN DOLLARS. I am paying less than half for a pack of 4 syringes prefilled with cutting edge biologic medication (read: the shit is manufactured in living organisms.) compared to the 20 year old tablet at $2.33 a pop.
My Lyrica would be $75 for a quantity of 60 (only $1.25 a pill, mind you) except for the co-payment card from the manufacturer that brings it down to $25.

So, for one month of just my disease related drugs I have spent $65. Not terrible in the grand scheme of things. But there are other medications that I have to get. Tramadol? $10. There's the cheap ass Xanax for $7 I mentioned earlier. There's generic Ambien for when I can't sleep, again going for $10. I have the option to go for generic Buspar to help with OCD at bedtime instead, that one at $7.  The generic Prozac for the anxiety issues? That one is only $5, which is good because if it had cost more than the Xanax I would have seen even more underlying issues in our society. Generic Prilosec for the stomach issues that come with constantly taking NSAIDs, that one cost me $10. There's generic Phenergan for the nausea from taking poisons on a regular basis, also about $7.

I didn't make any of that up. I pulled up my Walgreen's app and looked to see how much I paid each time I filled them. Oh, don't let me forget the round of antibiotics here, there, and everywhere for whatever bullshit you've picked up- that's going to run between $5 and $10 depending on what you've got.

We've brought my base for each month up to $90, God willing none of the PRN meds need to be refilled. And how much do you think I spend on Ibuprofen?  Jesus Fuck, I don't want to tally that, my stomach hurts just thinking about it.

Those are all things that would be a debit of money from your paycheck or credit card total or however you're living month to month. What about the lack thereof?

I can't work full time anymore- that has been made abundantly clear to me. And even with that shorter schedule, I still get sick. Kids come into the office and they have snotty noses and they rub them and then they touch everything in the room while I'm gone and I'm pretty sure sneeze on my pen. (I am not even shitting you, I have been sneezed on in the face by a grown-ass patient.) The general population is full of germs.  Hell, I'm full of germs, you're full of germs, we are all GIANT GERM FACTORIES. But our personal microecosystems are unique and work together to create a sort of symbiotic (most of the time) situation for all of us. It's when you are exposed to the strains of something NOT in your microecosystem that you are more likely to get sick. So being around strangers all day every day means you're just upping the odds that you'll come down with something. That like, doubles, when dealing with kids because kids. Touch. EVERYTHING. Every goddamned thing, I am not even exaggerating. (What need is there to touch the TV screen? You're holding an iPad, what do you think my screen is going to offer that yours can't? It isn't a touch screen, BTW.)
So, we get sick. And that means a sick day, and yeah, that sucks for everybody. But here's how a sick day looks money wise: Hand over $40 for the copay at the office, hand over $10 for the prescription at the pharmacy, plus another $20 for OTC meds to treat your symptoms, and then maybe some tissues or chocolate or something. Then let's not forget to add the -$xxx.xx that I would have earned that day had I been at work, because it's not like they're handing out PTO to part time employees most places. Not only was I scheduled to make less money than you, but now I've lost another day of that SO I COULD GO TO THE DOCTOR AND HAND OVER MORE MONEY.

I'm debating whether I should add in the cost of concealer, foundation, and the other makeup it takes to make myself look presentable. I'm thinking yes, and I'm claiming it all as deductions on my taxes next year.

Thursday, August 4, 2016

Mornings Are for Coffee And Contemplation

So: if you're as into obsessing over TV shows as I am, you have probably already become completely engrossed in the world that is Stranger Things, the Netflix original series set to perfection in the 80's.

*SORT OF SPOILERS AHEAD!* 

So cut to Buzzfeed and their quiz to let you see if you would survive Stranger Things. And of course I jumped at the chance to find out if I would. The first shot is of my result. My friend, April, who is equally invested in fictional life, also took it, and the second shot is of her result. The third is the convo that went down after she shared her result with me.

If you can't do anything else for yourself, surround yourself with great friends!



Monday, July 18, 2016

Let's Chat About Coloring

The only valid excuse for this election cycle.
It's all the rage. From Barnes and Noble to Michael's, the end caps are overflowing with Zen Coloring, Mandala Madness, or Paisley Birds with Law Degrees. So, the big question is- are they worth it? Why would a fully grown adult- someone with bills and mortgages and car payments- sit down and start doing something they were forced to do in 1st grade art class?

It's BECAUSE you have bills and mortgages and car payments. Those are all the reasons you should, as a reasonable adult, be sitting down and coloring on a regular basis. Not only is coloring fun (otherwise how would it keep young kids entertained), but it gives you something to focus on, something other than your stresses in life. At the end of it, you get a pretty piece of artwork to put on your fridge (I'm not old enough to not do that); but you have gotten more than that- you have a chunk of time where you couldn't worry about what stuff you could buy as a store brand to save a few cents here and there in order to make the car payment.

Consider the Mandala, noted on Wikipedia that it "is a spiritual and ritual symbol in Indian religions, representing the universe. In common use, "mandala" has become a generic term for any diagram, chart or geometric pattern that represents the cosmos metaphysically or symbolically; a microcosm of the universe." The use of Mandalas for relaxation has been seen not only in these new fad coloring books, but also in therapy and spiritual meditation. Focusing on the image, which is meant to mimic the symmetrical and interconnected nature of the universe. A lot of people I know who color find them very soothing and help with their overwhelming feelings.

THIS motherfucker.
For me, Mandalas freak the living shit out of me. Everything is interconnected and what if I think that I like the color I started this line with, but after a little while I see how much more visible it is than I thought it would be and now I'm stuck with this color I didn't want so much of. Maybe I'm just not calm enough yet to deal with a miniature universe that I'm responsible for, I might have to work up to it. Probably speaks to my coping abilities in day to day life.

I prefer the scapes. Lake shores; images of Disney princesses; I have a bunch of books that are from the "Color the Classics" series, letting me bring to life my favorite classic books. Those make sense to me, they have rhyme and reason, a pattern that I can clearly see and follow through with. I love those.

I think there's also a physically therapeutic aspect to coloring for those with chronic pain in the hands and arms. Just like knitting or other activities that require fine motor skills, this helps to strengthen the muscles in your fingers and wrists to keep you more dexterous.

The flip side of that coin is that, there may be lots of days where you're in pain and those tiny Mandalas or intricate pictures are just too much to ask. There's nothing wrong with a more basic book, although a lot of books have a good variety of skill levels in them so you can skip around from one to another. And if you have some issues with OCD like I do, it can be a good exercise in ignoring compulsions to do every page in order.




Monday, July 11, 2016

Spoons

"How the fuck am I supposed to have a
dinner party with TWO spoons??"
Have you heard of spoon theory?

For a long time I hadn't, and I was always so confused to see people referring to themselves or others on message boards as "spoonies", I thought, "what a bizarre nickname to give yourselves." But then finally, it occurred to me that I have this fancy thing called "Google" where I can find these kinds of things out.

Here's the easy breakdown. Look in your kitchen drawer- go ahead and I'll wait here. So, when you
looked in there, you probably had about 3 less spoons than what you bought, because that's how life works. So imagine that YOU are the cutlery drawer, and every morning when you wake up you have so many spoons in that drawer.
On a side note, the carnival will NOT
accept spoons in lieu of tickets or payment.
Everything you do in life costs you a certain number of spoons, like tickets at a carnival. When you wake up each day, you think of the things you have to do, how many spoons each one costs, and make sure you have enough spoons to cover it. Some days you might find that some spoons are missing; other days you may miraculously have more spoons than normal, almost like the dishwasher spit up in the drawer. (Those are the best days.)

This is an easy way to explain to your friends why you don't have the energy to come over "and just hang." That's one spoon. Or a movie, that's probably two spoons, between getting there and then the stiffness from sitting for so long. Those activities may seem innocuous to most people, but for someone with chronic pain or fatigue, they sound like running a 5K to get to a rowing contest you're competing in.

It's so difficult for others to understand what it feels like to ALWAYS hurt. Every second of every day. Try to explain it to your friends this way, and if you have to flake on plans at the last minute, or turn them down for an invitation, just let them know that it's only because all of your spoons went to working and grocery shopping, taking care of the kids, or some other vital function society insists you do like "showering" and "good hygiene".

And I know it takes time for them to understand why you seem so flaky and unreliable, but just be patient and remind them that you really are trying your hardest. If you are a good friend, who is emotionally there for them, then you should be able to expect understanding from them in return. (That's why texting is the greatest invention ever!)

What do you guys tend to spend your spoons on?

Sunday, July 3, 2016

Pretty Girls Have All the Luck

My Heaven- Ulta.
I love nail polish.
I mean, I LOVE nail polish.
When I have a bad day I have to fight the urge to go buy new nail polish.  One day, I actually bought some on my lunch break just to calm down and not punch someone in the face.  (It was Essie's 'Ballet Slippers', and it appealed to me on several levels.)  I will admit, I do this with more than just nail polish- make up too.  I'm addicted to eye shadow palettes.  And lip stick.  And lip gloss.  And those last two are totally different things.  Also, every one of my nail polishes is a different color, no matter what my husband says.
The hard part is, I can't paint my nails very easily any more.   In college I would paint them a new color every night.  I'm not even kidding, every freaking night.  It was a running joke in the sorority about what color Kathleen's nails would be that day.  Instead of a real status on Facebook I would just put up what color I was wearing.  It was a great way to relax; it was a time during the day where I couldn't write a paper, or draw a poster, or paint a rock with puffy paint (did I mention I was in a sorority?  There are a lot of posters and puffy paint in a sorority.)  It gave me a time where I had to relax and be alone with my thoughts, a time when I couldn't multi-task.
Now, however, painting my nails is more of an ordeal than it is a spa experience.  I have a tremor, and between the difficulty of grasping the brush and the shaking of my hand, my hands end up looking more like a hot, hot mess combining Picasso and Kesha.  And toes- forget that.To bend and twist around to try and reach them is too painful to happen more than once a month. (Thank God polish seems to last longer on toenails.)
It's very hard to let go of something I have loved so much for so long, that has been essentially a part of me for over a decade.
Same goes for the make up I love buying.  I used to adore getting dolled up, learning new ways to put on eye shadow, finding fun and funky combinations of colors.  Wearing drastically different lipstick from  day to day can completely change who you are, in my opinion.  But, when I wake up to get ready for work, fingers swollen, knees and hips stiff, it is awfully hard to find the energy or the conviction to do anything more than mascara and concealer.
How frustrating it is, to lose those little things.  And the loss of feeling like wearing makeup is doubly painful after a bad night's sleep when I look that much worse, or some stomach bug I picked up and now I'm covered in burst blood vessels from yakking.  (Yep. That happens a lot to me.  People think I have some sort of transient freckle condition or something.)

What do you guys think?  Do you have this same experience with something?  I know most people don't understand why I don't "just get up earlier and put makeup on then?"  OHMYGOD, how did I not think of that before this moment??? (I'm so glad those people exist to help me think of these things. ) But hey, maybe there's something magical that I'm missing- advice from anybody?

Stay tuned

OK, so my goal on this rainy (because if course I just bought a cute bikini) long weekend is to not only post a new blog, but also to stock pile a few more.  Look for real content today or tomorrow.  Or more likely, at an ungodly hour tonight.

Thursday, May 12, 2016

Sorry I suck

I need to bring my life into focus.  It's so hard feeling 75% at best all of the time,  and it's easy to let myself get soaked up in work and feel too drained to do the things I love when I get home.  (Like write run on sentences for you lovely people.)
I am an introvert.  I can't hide that.  If you walk into my house you will quickly realize it.  Our guest room is not only an office,  it's also a walk in closet.  LITERALLY. 
I haven't put clothes away in ages.  There are several laundry baskets full of clean laundry sitting there because I wear the same 4 shirts,  2 sweatpants,  and 2 pairs of jeans all the time.  The rest of the clothes are like Christmas presents when I dig them out of a basket and I have no memory of buying them.  I mean,  all I wear to work are scrubs,  and I change into lounge wear (Aerie speak for pajamas)  as soon as I get home.  What's so annoying about that is that I have some cute fucking clothes!  I must,  because I remember looking really cute from time to time. 
And I'm no less lazy when it comes to the chill part of life.   I'm watching supernatural AGAIN.  From the beginning.  For like the 5th time.  Not just because of the pure awesomeness that is this show,  but also because I don't have the energy to watch new shows that I have to pay attention to.  I often save up a weeks worth of TV and catch up on Hulu all in one day.  I also just reread Harry  which,  let's be clear,  there is no shame in either.  But once again,  I'm doing something I've done several times before rather than  reading something new. 

So I think it's time to refract myself and bring some clarity to life,  because it can't all be wake up,  make small children cry,  sleep,  repeat. There's got to be some TV or a book in there somewhere.  Right?

Monday, March 14, 2016

Songbird

As a note, I have been working on this particular blog post for a while, and there have been several drafts. I appreciate your patience while I wasn't posting anything recently. 

Looking back, it is a tremendous thing for a sixteen year old to rationalize her mother's death as "the next step" or "expected." Those phrases may be logical, but they don't fix the psychological damage that comes with that situation. The same can be said for explaining away her liver damage with reasons and medical facts; not, at least, when the result of said damage was years dying in front of her child; sometimes more quickly than others. This truth is probably why I am such a disengaged individual from my feelings. Could anyone short of Sybil watch their mother die slowly without ending up worse for the wear?
I guess I should really start this with a preface (can I even call it that when it's the second paragraph?) I am writing this article because what happened to my mom is a reality that can belong to any of us all too quickly when dealing with chronic pain.  We are tested every 3 months to check liver function, ANA's, CBC's, Sed rates, C-Reactive proteins, and hosts of other weird sounding measurements to make sure nothing in our body is failing as a result of the essentially poisonous medications we take. I want everyone to realize that the doctor's do this, not as an annoyance, not as an extra copay to collect, and not just for you. This is for the well being of everyone around you, everyone who would be affected if your body was overtaken by the side effects.  So read this with a grain of salt; it is not unbiased, it is from the eyes of a sixteen year old girl who had her heart broken. But I think that bias is necessary sometimes, to see exactly what gets left behind if things go wrong.

When I was about 8 years old, my mom hurt her hip. It was January, and I remember that because it happened while she was vacuuming up the confetti from our New Year's celebration. (I was sick, in case you were wondering. Slept until 11:55 and they woke me up to see the ball drop. I couldn't even drink sparkling apple juice for fear of yakking it back up. Story of my life, and I was only 8.) The doctors found her muscles and tendons to be fine, so they did a bone density scan. I believe the diagnosis was early osteoatrophy, but hey, I was eight, like I really know. The best course, they said, was a total hip replacement. And please, bear in mind that this was in 1992, the technology was still evolving, the process was bulky, painful, and incredibly slow. I remember her crying out in pain every time she tried to get off the couch. She needed help to do anything, because movement without your hips is impossible.
(I feel that this is as awkward a time as any to tell you that my mother had a drinking problem when I was younger.  In all fairness, we're Irish, so I don't know that it was a "problem" so much as a "lifestyle choice". But my history with self medicating also doesn't belie me as a credible critic.)
Because of her history with substance "abuse" (or, in my world, "grown up Tylenol") she refused narcotics to help with the pain.  I cannot stress enough that this recovery was not like your grandma that had it done last year- the process of fitting prosthetics was not as refined, they were uncomfortable. And the hip was so major a surgery that they rarely went in to replace it a second time if there was discomfort. You can imagine that, in any surgery where part of your frame is sawed apart and yanked out (she was awake for that by the way) there is a fair amount of pain afterwards.  There's a reason they prescribe narcotics- and it's because your standard acetaminophen won't begin to touch the pain you're facing. Desperate, she took more and more Tylenol hoping to be able to function without crying. After the stress on her liver by the "over" drinking, this was just too much; her liver began to fail.

So at eight years old, my parents sat me down and told me that my mom would be put on a list to get someone else's liver when they were done with it (what a politically correct way to phrase it, much better than my "hoping for someone to die), they showed me the beeper, which was so tre chic in 1992, and then told me if she didn't get a transplant she had 2 years to live. I was eight years old. And I was expecting my mother to die by my tenth birthday.
Ok, maybe it wasn't as bad as it could have been.
But this story isn't totally sad; she didn't die before my tenth birthday. In fact, she was there to plan my Sweet Sixteen. For that, I can never, ever, stress how grateful I am. We didn't have to have those 8 years, those were a gift.

And yet, the story gets harder to tell from here.

When I was 15 Mom started needing blood transfusions.  They could see that her red blood cell levels were low, but her platelet count seemed fine, so there was no problem with production. When they drained a distended abdomen they found, not blood, but just fluid, and they weren't sure where it had come from.

Let's all be on the same page that I was in the middle of my best act yet- the snotty teenager. And I played the part to a tee. Every medicine she needed help getting, every time she fell and needed help, every emotional scare; Every last one of those irritated me to no end. How dare she; she who had tried so hard to conceive me, worked so hard to keep me healthy while I baked, had nearly died multiple times including child birth that went on for hours and hours and into another day, how dare she inconvenience me by asking me to hand her her cane. Or carry the laundry upstairs. Or to feed myself. Just rude, that's what all of that shit is. And I will never make my kids be burdened by me this way. (cut to 15 years later when I'm doing the same to my husband. Can you see my sheepish face eating humble pie?)

Sometime in February 2002 things started getting really bad.  I don't know the details, because I was too self absorbed to get much info, but I know that she needed another blood transfusion. She didn't come home when it was finished, however. They needed to watch her, something about her testing was alarming. Being freshly 16 and so busy preparing to audition for the lead in the school play, I had very little time for empathy. I remember the day I found out I got the lead in the play, because dad picked me up, which was not the norm. I ran over to the car (as best I could, I was wearing open toed strappy chunky heals that were a size too big, so it was rough going. Don't you love those early 2000's fashion trends?) "I got it! I'm the Bride, it's my first lead!!" to which my dad responded "that's so great to hear, we knew you could do it."  Then there was that silence. That silence we all knew. And I heard the next part of our conversation in my head before it even happed. "Where's mom?" "She's in the hospital, we're headed there now." "Is she ok?" "They're running tests on her now." That conversation never changed.  So I started learning my lines while sitting in her hospital room eating apple pie (the McDowell Hospital has the BEST apple pie) and complaining about wanting to go home. Mom just slept or watched TV, what was the point in my being here? I can create this same situation back home, too, minus the smell of death.

And that is the daughter I was that night when I picked up the phone. When I answered it was Mom, slurring her words and seeming disoriented.  I assumed she was just drugged up and thought "how inconsiderate to call your daughter sounding like that. Like it isn't hard enough on ME already." She asked a few things about my day, about rehearsal, about my friends.  I was a snot nosed brat the whole time. My side of the conversation probably went "Fine. It was fine. They're fine I guess, I don't know."

If I have one regret in this world it is that conversation.

She asked to speak to my dad, and I was relieved. I handed the call off to him and went back to watching reruns of "Friends" and talking on the other line with a good friend who was watching the same episode. A little while later dad came back in and said that we would be leaving first thing in the morning for Chapel Hill, NC.  Mom was being E-Vac-ed to their RICU overnight. I would miss school and go with him. No questioning it. "Can we stop at Barnes and Noble, I have nothing to read" "Fine." The next morning was foggy in the mountains of NC, we were in the Smokies, after all. As I was packing a thought occurred to me, and I turned to my dad, "Will mom want to ride home in the back seat so she can lay down or will that be uncomfortable for her leg?" My dad was quiet for a moment, ever the man who thought through every syllable before speaking, he said sort of hushed, "Kathleen, if your mom doesn't get a liver she won't be coming home. "

All I wanted to know was where should I sit, and instead I found out my mother was near death.  But still, I could convince myself this was an overreaction by people.  After all, the last prediction had been off by 8 years. Still, I was scared, and I knew that mom must be too. So I went and got her rosary, made from ashes from her older brother Billy. She always kept it close. I packed that to make sure and give her.

It's a four hour drive from our home to Chapel Hill, not including the stop at Barnes and Noble so I would have books and leave dad alone. I remember the exact way from the parking lot we used to the RICU unit. Through the lot to a breezeway which we crossed and which came out in front of one of the big entrance. "Mom's not coming home with us." We entered the sliding doors (part of me hoping for a door into an alternate reality where my mom wasn't sick.) And she wasn't sick; she was dying. We walked to the elevators and hit the up button. We waited while people who seemed upset walked out of one. We got on and hit the number for the RICU floor. When we got off the elevator, there was a Wendy's to my right. A fast food joint, on the 4th floor of a hospital. I had been going to the wrong fucking hospitals before that point. We turned left instead and walked to the end of a corridor, the left across another indoor breezeway connecting us to a new building. Down that hallway somewhere was the RICU on our left. You had to wash your hands according to surgical protocol, and once you'd done that they opened the door from the inside so you didn't touch it. You were gowned and gloved in the antechamber. These were all patients who were one sniffle away from death, and those nurses weren't taking any challenges.  I saw a mother with 3 young kids sitting in the family waiting room trying to entertain them without crying. She had been denied access to a family member because of the kids.

The first time I saw her, I thought I wanted to leave immediately. Most noticeable was the respirator she was hooked up to, letting out pneumatic puffs and hisses in a rhythmic time, making me think I was living in Steel Magnolias for a minute. But just as noticeable was her skin- it was yellow.  Like the color your snot is when you're really sick and junk is just constantly running. All over.  Eyes, fingernails, everything. It was the most horrifying thing I had seen up until that point. But I became acclimated. Because, after all, she just needed a liver and those are donated all the time, so she would be fine.  I settled in to pass my time with my unconscious mother.

I remember an argument with my dad when I tried to watch Boy Meets World when we had just passed Golden Girls. He said it was her room and that's what she would want to watch. I said what does it matter and, I swear I thought he was going to cry, he said it matters because she might be able to hear, so we should give her what we can. And so I turned my back on everyone and read my book.
Teenager.
This marked the beginning of her third week in the hospital. Over the next two weeks she improved a lot, we went every few days and on weekends, I missed a lot of school. She began to open her eyes, she could recognize people and understood what was going on. We seemed to be hitting stable. The yellow was still there, but, we knew there was only one way to fix that.

Good Friday, my dad drove out and left me home, sick with a head cold.  If you think that I would be allowed within a 100 foot radius of that RICU then you've obviously not watched enough "House". I stayed home and tried to decide if I should have my guy friends come over (not because they were guys, but because they were my best friends. Besides, they were gay they just didn't know it yet.) Halfway through the day I got a call from my dad saying that he was coming home and to pack, we were leaving at 6 the next morning. I did as I was told, but I didn't understand, because I was still sick.
When he got home he explained that mom had been better. They had taken the breathing tube out and she was able to talk. They moved her out of RICU and into a step down room. She could answer questions. But then, very suddenly, she started acting disoriented. She didn't know where she was, she didn't recognize him. They quickly moved her back to RICU and had told my dad to get me there as fast as possible, the liver was going fast. When we stopped for a rest area, the doctor called my dad again and just said "Hurry, we can only hold her a bit longer." I started thinking about things I had heard on TV. What if my liver could help her? They just needed part of it, right?

When we got to the hospital we walked in faster than we ever had. We scrubbed and they told us we didn't need to gown, but still made me put on a mask. I remember, vividly, the nurse who was leading us in turning to me and saying, "Your mom is in pretty bad shape, I want you to take a second to prepare yourself because this is going to be tough." and (snotty teenager alert!) I just scoffed and said, "I have done this before." I was wrong.  I had seen something completely different before. Before, I had been seeing sick.  Now I was seeing dying. And it was heart wrenching. I stood there staring at her, while the doctor talked to my dad. I knew she must still be jaundiced from the liver failure, but you couldn't tell because she was so blue from oxygen deprivation. One machine was suctioning fluid out of her lungs (yellow) while another breathed for her. Her body was completely unresponsive to anything, sound, touch, even startle. My mother's body was there, but Mom was gone.
They had come to the decision that even if we waited for a match there would be brain damage from the respiratory issues, and so dad felt we should turn off the machines.  "What about my liver?" I said it so quietly I was second guessing if it had even been out loud. "Well, you might be a match, a partial transplant would be an option..." and my dad cut in, "No. No, she says in her living will that she won't take a donation from our daughter.  No testing or matching. She refuses it even if its perfect."
I didn't know what to say.  My Mom had known that I could possibly save her, and instead of asking me if I thought I was ready, she had made the decision for me? No ifs, ands, or buts about it? And no talking back because she was essentially dead. Easiest argument with a teenager I've ever heard of. My dad then turned to me and said words I will never forget. "I think we should turn the machines off, its what she wanted in her will, but she's your Mother and I won't take her away from you if you aren't ready. You tell me what you want to do."

And there it is.  The cheese stands alone. I stood there a sixteen year old girl deciding the fate of my mother.  Was there a chance for a miracle? Would she be better even if we did get her a new liver (and now kidney's as well because the stress had caused them to shut down) was I dooming her to a life of learning how to walk again, how to feed herself, of adult diapers? Would she want that?

"Turn them off." And then I went numb.

I remember asking for a priest to be called to perform Last Rites. He used the rosary beads from Uncle Billy's funeral. And I remember sitting in the family waiting room. On the TV was news coverage that the Queen Mum had died that day. The Queen of England and I had lost our mothers on the same day. I started crying. A nice stranger handed me tissues and asked if I wanted him to get me a refill on my fountain Sprite (Wendy's, you convenient bastards.) He asked if we were all going home, I said no, and he said I'm very sorry, and left me to cry and watch my grief mirrored on the news by the Queen of England.

It isn't like in movies or TV where you say pull the plug and they literally do it then.  There's at least an hours worth of paperwork to fill out that says they are not liable for the death of your loved one. I'm sure there's also some sneaky clauses in there, but the end would have been the same for me so I didn't read those. When it was time, they turned off the respirator and the pump, they kept her sedated so that she wouldn't feel anything. You could tell the moment they turned off the machines that it was over. Her body had given up, and it looked similar to someone who just ran a marathon laying on the couch for the first time. Just utter exhaustion but the race finally over. They had asked me if I wanted to say a few words to her before she was gone, so I held her hand, looked at her with the most searing pain I have ever felt, and all that could come out was "Oh, Mom."
After she was gone, dad kissed her forehead saying he loved her, and tried to tussle her hair while he said "we're gonna miss ya", but instead of tussling her hair, it just shook her whole head. It was eerie, and I just wanted to be out.
The process itself takes a lot longer than they show on TV. It was probably short for us because her body didn't fight, but they extubate the patient and let their body try everything on its own, it takes time. But just like the marathoner, her body had no fight left in it.

Also unlike in movies and TV there is paperwork to be filled out AFTER the plug is pulled. So I went and waited at Wendy's and couldn't help but remember that Dave Thomas had died not too long before then. I can't eat their Mandarin salads anymore.

When we drove to the hotel we started calling people. Dad the family, and me the family friends.
I had gone outside so we wouldn't be talking over each other and was talking to one of my friends when I noticed a car drive by that looked familiar and the people inside were staring at me. (Listen, I had terrible vision even then) and then they drove around again, finally stopping. I realized it was my Aunt and Uncle from Georgia, they had come up to see my mom but got there about 30 minutes after we had left. My Uncle found out from a nurse that my mother had died within hours of his arrival. But they did know which hotel we were at so they drove straight over.  The looks on their faces will never leave my memory.

Her older brothers had to bury their baby sister. Her husband was left with a young girl to raise. I'm not saying this in a blaming way. It is only to show you how many other people were poisoned by those medications. I am a stronger person because of what I went through, and my father and I are closer than most, but there were a lot of hard times before that.

I know when you're hurting it is tempting to take just that one extra pill. Or when you feel like you've developed a tolerance for something to start taking a little more over time to fight it. But please, don't change the way you take a drug without talking to your doctor. It is very dangerous, and it doesn't affect just you. I told this story, which is so intimate for me, because I feel like it is easier to understand the dangers when it isn't just you who feels the affects. You feel the pain from the failing liver or kidneys, but your children feel the anxiety of wondering if you'll get your transplant. You feel exhaustion as your body starts to fatigue and slow down, your children feel fear that something has happened every time they get a phone call at school, or a different person comes to pick them up. Everyone feels it. And that one more pill might relieve your pain temporarily (or more often only take the edge off) but it causes a pit in the stomach of everyone around you.

Saturday, January 9, 2016

Best friends are the best.

Is that how they got that name? Now it makes sense.
Me with y'all.

A little refresher: my husband works noon to midnight. It's a weird schedule, but he ends up working every other weekend, with random days in between on 2 week rotation. So that means I spend a lot of time by myself.

Sometimes that's a great thing. I love reading, and time alone also means I can binge on the shows he hates on Netflix. I have taken up coloring (I'll write a post on that soon.) and I like getting to just be zen.

On the other hand, that means I'm also spending a lot of time having full conversations with a coon hound, Strabismus Kitty, and Cataract Bunny. It's the downside of living so far away from friends and family. And as healthy as those convos are for my mental status (I'm totally sure), it can start to wear you down. And when you combine that with the wearing down from the fatigue and the pain, you're left with someone who tries to put the toothpaste away in the freezer (true story.)

That's Penny being disgusting.
Thank God for Skype. Even from 855 miles away, I can spend hours doing nothing with my best friends just like old times. I started writing this post earlier this week after a bad day. In pain, stressed out, overwhelmed, and with my husband at work I felt like crap. But I texted a best friend and asked if  she was busy, if she wan
Maybe Penny actually IS Death.
ted to Skype.  And we just talked for 2+ hours about nothing in particular. I did my nails. She cuddled with her dog (whom I hate. She smells like death.)



Pizza party!
My absolute best friend, ride or die, how did we not get arrested at some point best friend and I also frequently Skype. We watched "Scream Queens" together from 988 miles away, beginning to end. We would even eat the same foods so it felt more like hanging out.

My support system is just the best. My husband cares for me like I'm a Saint in her last days. My friends will always make me feel better even when I genuinely think it can't happen. My family laughs right along with me at the ridiculous ailments I manage to "catch"(as do they, thanks to the shared genetics.) My arthritic father and I can complain about the weather together.

I think sometimes it's easy to forget how vital a support system is for your health. And this doesn't just go for someone with a chronic pain illness: EVERYONE should have a good support system. In today's world there's really no excuse. None. There's Skype. There's Facebook. There's texting. There's the fucking phone which has existed for HOW LONG?? You don't have to even say anything. But sitting there looking at another human, talking in real time, that connection will do wonders for your mental state. Just someone to say your stupid thoughts to. "What if we are all just some Sims on an alien's computer, and when we forget why we went into a room it's because they cancelled our action?" These are thoughts that have to be said out loud.

Sunday, January 3, 2016

Things are in the works

I've been quiet for a while, but a lot has been going on and I'm working material to post.
If you have any suggestions for posts you want to see or topics to touch on, email us at contribute@thefaceofarthritis.com and let me know!