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What RA Pain Does To Me: A Practical Story About Just Yesterday

So it been a crazy month with as you all know, worsening back & hip pain. 
It’s so crazy, that just yesterday I was in pure agony. 

It’s almost remarkable how pure the pain was. So intense was I panicking, whimpering. 
I wanted to cry, but I couldn’t. The tears wouldn’t come so I just dry sobbed, my face contorting in ugly ways. I just wanted my husband so badly, by my side. He always makes everything better. Knowing exactly when to laugh and when to cry as well. 
Right now I could use his gentle pat and reassurance that I would make it through, I would survive this, and the pain wouldn’t actually kill me.
But he wasn’t here, he was at work and it was up to me to make myself feel better. 
So I did everything I knew to do. I got up and painfully shuffled over to the pantry where my trusty cane was hidden -the perfect spot in the center of our tiny place, right next to my swiffer. 
Two perfect representatives of my disability. A cane to help me walk and a mop that I don’t have to ring out, scrub with, bend over, or carry a bucket. I can just spritz, push, and then throw away the dirt. 
 
But anyways, back to the story. 

So, looking into the closet, I grab it and two ice packs out of the freezer, tucking them into my hip and back and I let the cold do its job. Freeze the pain. Even with the cover and blanket, my skin still turns bright red with the pressure with which I beg for them to work. And it did, for as long as it was cold. But our Miami warmth doesn’t let anything stay cold for too long and the ice packs melt away way too soon. 
Heat now, right? Yes, I was remembering. My first aid lessons for any trauma or inflammation. RICE. Was that right? Cold, then heat? Should work. Will it? I don’t know if this trick applies to people with a faulty immune system. Whatever… 
I try it anyway and add in a 20mg tablet of prednisone for good measure – remembering my dear husband’s advice from the night before. When the pain first reared its ugly head. 
   “Here, boo. Take this. Did you forget your infusion is next week?”
   “Oh yeah… That’s right. Great!” I rolled my eyes, “perfect timing for me to be working on this speech.” 
The flashback is so clear in my head. It’s funny how I remember his words of wisdom whenever I’m alone and don’t know what to do. It’s even funnier that he remembers all the advice I forget to give myself! I’m the one who’s had RA for 20 years, he’s only even known about RA for 7. 
I guess he’s really is becoming my new “cane” or “crutch” or whatever you want to call it. 

Eh who cares, I think to myself with a smug smile, I can’t do it all–be in pain and remember what to do about it!
Then, more solemnly, I think, I need him. No one should do this on their own.
And I jot the thought down. Adding it to the running list of ideas I have to help my RA community. 
“Ways to strategically and manipulatively encourage patients to find someone, anyone -doesn’t have to be a spouse, could be a distant family member, a cousin, a friend, a colleague- anyone to confide in.” RA is so isolating -I know that personally. It’s so hard to make friends when I’m constantly struggling to keep up with people even 3x my age. Not to mention, the worry that any outing means they can’t relax and enjoy because they’re having to recalibrate their speed down to my level. 
But anyways, back to the story.

So I pop in my prednisone, silently praying for it to work and I turn on Netflix to one of my favorite shows, The Vampire Diaries. 
Utilizing one of my other techniques in managing pain and flares. Healthy distraction. 
Plus, this show always puts a smile on my face. I’m not taking about RA, I’m not thinking about RA, I’m enjoying escaping into the world of vampirism where regular human beings can be transformed into the supernatural. They can run fast, they can heal instantly, they can live forever, and they don’t have to consider the future. 
“How awesome would that be,” I think to myself with not so many words, “I wish vampires were real. I would want to be one, just so I could be cured of my RA.” 

Oh great, here I am thinking about RA again. But next thing I know, the episode is over and the ending reminds me to not leave the cold on for too long and put my ice packs back in the freezer for later. How responsible I’m being! I’m so proud of myself. 
So I decide to go back to my secret project and work some more. 
Standing this time, trying to move around. That’s supposed to help right? Nevertheless, a few minutes later the pain peaks, but I push through anyway, reminding myself I’m supposed to move around. Laying down watching The Vampire Diaries won’t help forever. So I continue my work, focusing on my “rheumy” friends I care so much about. 
Over an hour goes by and I feel like I’m going to collapse. My knees now are hugely swollen and I struggle just to crawl into bed. 
“I just need a little break. No more moving.”  
So I lay down and put my favorite cutting board on my lap, using it like a desk to hold my papers. Not long after though, the pain intensifies and I start really getting scared. 
So I took a half of a pain pill and waited. 
The pain got worse.
I have to pee but -oh God, no- I can’t get up. It hurts too much. 
Bargaining with my subconscious, I decide to go restroom and grab my ice packs from the freezer on the way back to bed. 
I knew I would need them later, I thought to myself, figuratively patting myself on the back for thinking so far ahead. 

I apply my ice packs with their covers and press them deep into my hips, forcing them to work. 
I sigh and wait, but nothing happens. Nothing except more pain. 
Oh my goodness this cannot be happening. What if I this doesn’t go away? What if I can never get up? What if I have to pee again? I felt myself starting to panic. 
So I pop in my mouth another 20mg of prednisone. I’m at 60mg now in less than 24 hours. 
This has to start working soon, doesn’t it? Does this drug even work like that? I don’t know if I’m doing this right. I add another a half of a Percocet, just because I felt myself getting really scared of the pain. 
It hurts so much not even my “healthy distraction” is working. God, it hurts. I find myself literally crying from the deep hurt and I remember why I need pain in my life. It’s so humbling. Never could I ever get big-headed about all my ideas. The pain reminds me that I’m really nothing more than the product of the mercy of a redeeming God and caring friends and family. 
The pain reminds me that without them, I would be nothing more than a heaping mess. 

Its at that time I decide I should see another episode of The Vampire Diaries and put on my hot pack. The pain peaks higher and higher and I start getting even more terrified. 
How is this happening to me? Shouldn’t my pills and my packs stop it? Lessen it? It feels like fire and a sharp knife sawing away my legs, right at the hip. It’s a sharp, deep pain and so overwhelming. I couldn’t sigh or relax muscles, even if I wanted to. I’m so tense with hurt, fear, and anxiety that my breath comes and goes in shallow and quick bursts. Pain. It feels like my body is literally trying to push it off of me. Like a thick heavy blanket. But I feel it deep in my bones. And then I remember that it is deep and in my bones. I remember how severe bone pain is rated on the pain scale and it comforts me, knowing I’m fighting one of the worst pains the human body can physically go though, on a daily basis. 
It reminds me how tough I am. 

But nevertheless, I pop in another half of a pain pill, because the truth is I’m starving and the only way I can make myself a PB&J is if I get up, which I don’t think I can. 
This time I struggle harder to pull myself out of bed and I wince loudly with each micro movement. 
I instantly wish I had my walker. It was so much easier to deal with hip pain then, having the ability to take my body’s weight off of my hips and onto my arms when my hips couldn’t take anymore. I struggle to walk the 12 paces to my kitchen when I get halfway there I suddenly and seriously consider turning back to bed instead. This is too hard. It hurts to much. I need to sit, lay down, anything. I don’t want to be away from my ice pack or my hot pack. 
But I get there and toast my bread -the seconds seemingly ticking away hours- and grab the peanut butter and jelly, hoping this small prep will get me back to bed faster. It’s gotten so much worse in the last couple hours and I wonder why the prednisone isn’t helping. 

It’s then I remember Dr. Weitz’ words from just the day before. 
“If prednisone helps, it’s inflammation causing the pain. If it doesn’t, it’s joint damage.” 
And I practically drop my peanut butter filled knife onto the floor. 
Now I’m really scared. 

Something I think most of us fail to mention is how scary pain can be.
The fear that the pain is causing joint destruction
that soon you’ll be immobile, permanently disabled…. is petrifying.  
My intention with this post is to raise more awareness about the fear of pain and disability
in the hopes of combating that fear, together.

Fear of the unknown is something we all face, but I know sticking together 
will make the journey that much easier. 😉

Why I like "Rheumatoid Arthritis" better than "Rheumatoid Disease

When people think of ‘Arthritis’, I like that they think of their grandmother, with mangled hands sitting in a wheelchair.  

When I tell someone, “I have Rheumatoid Arthritis,” I like that they are looking at my Young Face and simultaneously picturing their crippled grandmother.  
The word ‘Arthritis’ doesn’t need to be explained. They know what it is and how ugly it can be. What they don’t know is, to what extent.
There are over 100 types of Arthritis & 350 million people affected worldwide-not including those 350 million people’s family members. 
It’s possible the person I’m disclosing to knows someone with a type of Arthritis, but definitely no one as young as me. 
Then they ask the million dollar question: 
    “…But doesn’t Arthritis only hit at old age..?? 
    “Not Rheumatoid,” I respond, “Rheumatoid Arthritis is the worst of the Arthritides and it can hit at any age. I got it when I was 5.” At this point, their eyes usually widen, followed by a quick in-take of breath. The news shocks them. They know this disease is worse than grandma’s, because I got it so young. They also know my future. 
My future is their grandmother’s present. 
    Then they ask, “Isn’t there anything doctors can do? Medication?” 
    “Chemo”, I respond and methodically enunciate each syllable of my triple-therapy-combination, Methotrexate+Orencia+Plaquenil. 
    “Chemo for Arthritis. Now that’s a phrase that sticks with them. I don’t think the affect would be the same if it was, “Chemo for rheumatoid disease.” 
I like the word “Arthritis.” It suggests Deformity, Disfigurement, Ugliness. 
Which is exactly what Rheumatoid Arthritis is most commonly characterized by. 
It’s painful, it’s ugly, and it’s unforgiving. 
Then I hit them with the cold hard facts. As if mutilated joints wasn’t bad enough.       “For me, my RA has progressed to my stomach (that’s what my doctors say). Three years ago, I was diagnosed with Gastroparesis, which means my stomach doesn’t empty as fast a yours. I process food at 46% of that of a normal person. So I throw up a lot. At best, several times a week, at worst, several times a day.” This is when their face scrunches up, as if in pain. 
    “God, that’s horrible. I hate throwing up.” 
    “Me too,” I laugh. 
    “I’m lucky though,” I continue, “RA can progress to the heart and lungs, and even cause blindness. I get checked for that stuff all the time, but so far-so good! 
RA is like Lupus’ stupider, uglier, fatter cousin,” I giggle. I like my analogy to Lupus. People know Lupus too. This is typically when their eyes close and their head starts to shake, jaw clenched, as if to say, I don’t need to hear anymore, but they’re too polite to say so.
Then the most sought-after question follows. The one that is never absent during my RA disclosure. 
    “Gosh, how do u stay so positive?” 
Without skipping a beat I say, “I’m grateful for today. That today I’m doing OK because with RA, tomorrow is never promised.”
 I do believe people’s preconceived notions of what 
Rheumatoid Arthritis is or isn’t, is a problem.  
I can’t tell you how many times my college professors/administration have put me down, 
believing that because I “look” fine, that I am fine.

That being said, however, I definitely think it has more to do with 
spreading awareness and education, than just a simple name change. 
Awareness doesn’t have to be some big grand gesture or even a blog post.
It can be something you do at home. 
Sharing your story with the lady in the checkout line.
Changing your world.
One person at a time.

RA and Weight Gain

  I needed this so much today!
A month ago I decided that one of my New Year’s Resolutions would be walking around my block 4 times a week. 

My goal is to build muscle and if possible, lose some weight. I know most people would tell me that I need to have a more concrete goal, but because I have Arthritis, Polycystic Ovarian Syndrome and Gastroparesis, it’s really easy for me to gain weight and really difficult for me lose it. In PCOS, weight gain is practically inevitable. 
 So I’ve been trying my best to commit to my 4x a week walking goal and I’ve been doing it! Some weeks I can only do 3x a week because of flares or whatever, but other than that, I’ve really been working hard to stick to it. 
Well, that was until yesterday, when I stepped on the scale and saw that I was 3 pounds heavier! I was just so discouraged that after all that walking I could gain weight! 
Having RA and other Chronic Illnesses often means losing your “good looks” faster. With all the treatments I’ve been on and off, I don’t feel like “looks-wise” my 20s has been my peak- unlike other people my age. 
But when I saw this picture, I was reminded that I’m not like other people and 
I AM TRYING MY BEST. 
A little over a year ago, I couldn’t walk without a CANE.
SO, I figured out that I need to stop beating myself up & keep P E R S P E C T I V E.

I’m not using Rheumatoid Arthritis as an excuse for not exercising
because I don’t believe illness can be an excuse. 
It’s called a REASON  
It’s Reality. It’s my Reality
and keeping that in mind just makes me want to fight harder.

T.G.I.T: Thank God It’s Thanksgiving!

So tomorrow is Thanksgiving! 
But before you assume this is a #blessed #thankful I have Arthritis list 
because I’m an “RA Blogger,” please just stop right there. 
I mean, let’s be real here! Although I have accepted having to live my life with Arthritis and I’m grateful with how it’s shaped me… NO I will not be thankful for my Arthritis. Pssh!

Instead, I will do my own little version of 3 Thanksgiving RA hacks to get you through the holiday. 🙂
And before you think my hacks mundane, I will remind you unbelievers that it is important to learn from your mistakes.
……Particularly my mistakes that I’ve successfully made in just the last 24 hours of this                                                                                                                                       Thanksgiving…. 
1. Rest. Or better yet, take the day before Thanksgiving (today) off.
I’m so done with AMs…
So… Because I’m your standard overachiever, I went to sleep early last night (midnight) and set my alarm for this morning to 6:45am. It was the perfect time to be able to make myself breakfast and get in some much needed research for my upcoming speech before heading out at 9 to drop off my husband at work by 9:45am. Then I would come back home and finish allll my research and type up my outline by 12 to get ready and be out the door by 1 to get to class by 1:25. After class, I would go and “practice present” my speech till 6 and be right on time to pick up my dear husband at work at 7pm. We would then go home and have a nice low-key dinner in preparation for tomorrow’s high-key, fun-filled cook-a-thon.
Now, here’s where the plan went awry. By 5:45am I was awake and feeling some significant shoulder pain, but feeling completely self-satisfied that I woke up extra early. I proudly headed to the kitchen to make myself a nice breakfast which I quickly devoured. Now my gastroparesis got ahead of me and by 7 I had vomited at least 6 times. Still committed to bouncing back like the good overachiever I am I decided to rest for a little while and just read. Soon, my stomach ache turned into severe knee and shoulder pain with a severe headache to boot.     Ha! What was I thinking….?

2. Use those rubber-tipped tongs to get things out of reach. Or a husband or a friend or if all else fails, a light-weight miniature step stool. Anything, but nothing. 
See if you can spot the cookbook… -_-

This one actually happened last night, but I think it still counts. SO because I’m actually cooking for Thanksgiving, I needed my trusty cookbook. I normally keep it on the third shelf in my kitchen (because it just looks so decorative there! <–here’s the mistake

Well, right when I needed it most I was- of course- in the mood to cut corners so I bravely rose on my tippiest tip toes, lifted up my dominant right arm and carefully attempted to sneak it off the third shelf. Being 5’1” and more arrogant than agile, I scraped the bottom of the book with my finger tips when reaching just past the breaking point of my known-to-be-messed-up shoulder gave out on me just in time for my favorite cookbook to cartwheel off that retched third shelf and land a corner right on my head. Ouch. 
Now that I think about it…this probably contributed a little to my next morning headache and my late night-early morning shoulder pain which I eagerly treated with EXTRA heat.     ….Mistake??

3. Borrow some of your friends’ lightweight pots.
There’s my little stolen pot! Sorry mom! 😀
Now, for all of you cooking aficionados looking down your noses at me, hold your horses!
In my defense I do LOVE LOVE LOVE my treasured All-Clad pots and pans that my dear husband bought me 4 years ago at 60% off (deal of the century!). But this Thanksgiving, I’ve decided my precious All-Clad is not my friend. My trusty, even-temperatured, quick-heating, stainless steel pots would have to be left behind this Thanksgiving. Anticipating this problem in advance like I usually do (lies) I politely barged into my mom’s house a half mile away and rummaged her cabinets. There I found the perfect little light weight pot to test out my 1 and a half hour rice recipe. And so cute too! 
Ok so this wasn’t actually a mistake on my part. I had actually done something right for once! And right on time for my cook-a-thon tomorrow. 🙂
Now, If you’re questioning whether you should do this- or will- remember this:
 Thanksgiving food is easier to eat when you have your spoons. 😉
Not my turkey! Wish it was though…hehe

Happy Thanksgiving Everybody! 😀  

My Favorite Thing

For the finale of this First Annual #RABlog Week I’d love to share with you my 
Wildcard 2: Tell us what you really enjoy and how that helps with RA.
Well, that should be simple. Blogging, duh! 😉


I really can’t tell you how important blogging is to me. I love everything about it. 

So when I started this blog in 2011 on tumblr, I was very nervous. 
I really wanted my blog to be authentic. An honest reflection of my thoughts, whether they were likable or not. I wanted to never hold back and show what Rheumatoid Arthritis really looks like. Not like the bogus commercials on TV. 
But opening myself up was nerve-wracking! Especially to criticism, knowing that the whole entire world was reading my innermost thoughts!

So, cautiously, I wrote my first post.
       And then I figured out I only had like 10 readers, so I decided to let it flow! Ha Ha! 

For me, blogging isn’t about the amount readers or followers I have. As much as I love my readers and truly cherish the connections I’ve made through blogging.
I mostly do it for ME!
I was recently engaged when I started this blog and all I wanted to share my journey.
The magnificent ups and the treacherous downs in life with RA.

And not just my physical journey, but my emotional journey.
I don’t hide behind the curtain and share the pretty side to RA.
I share the bad times too of when I’m angrydisappointed, or in pain

But my absolute favorite part is sharing my victories. 
The good times, when I feel great! When I’m traveling, or gardening
But most importantly, when I accepted having Rheumatoid Arthritis. 
The truth is I believe having a Chronic Illness like Arthritis 
doesn’t just affect our bodies, it affects our souls as well. 
And I’d like others like me to know that it does get better. 🙂