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My RA’s behind the Wheel

People ask why at 27 I don’t drive long distances, the truth is that positions that keep me still for long periods (hands on a steering wheel, knees bent, foot extended) hurt me very much. I NEED to shift, move, turn, get up, etc. And that’s a daily thing. When I don’t do these things (or can’t because I’m behind the wheel) the pain of not doing them makes me desperate, and since I can’t take anything for pain—it also makes me reckless. Virtually every accident I’ve been in has been caused either because I was in too much pain and desperate to get home or too fatigued and falling asleep behind the wheel. I’ve had to pull over to take a nap more times than I can count. And that’s just from local traffic.

Today I remembered why driving long distances isn’t just risky, but impossible for me… at the present moment.

I was halfway packed ready to go to Orlando when I woke up barely able to pick up my son because my elbows were so stiff. Luckily, his crib is right next to my bed so I tossed him into my bed and laid down next to him. I rested with him for a long time. My RA keeping me in bed and my stubbornness mentally planning what outfits to pack for the weekend. In my mind, I’m thinking, “if the pain and stiffness in one elbow eases up a bit, I can still make the trip with one hand on the wheel.”

I don’t know where I’d be if I didn’t have people to tell me I’m insane. Probably dead in a ditch somewhere by now, because by tonight I couldn’t even carry my laptop and every sip of water I was thinking, “is this crucial to my survival..?” I even skipped dinner so I wouldn’t have to bring food up to my mouth.

Years ago, when my day job moved 40 miles away (1 hour+ in South Florida) I made the difficult decision to take the severance package out of fear I’d end up stranded somewhere and not able to drive myself home. If this had happened at the end of the weekend instead of the beginning, I’d be stuck until the flare up passed.

So if I cancel last minute, ask for a ride, refuse to RSVP, please forgive me. It’s not me driving, it’s my RA behind the wheel.

Painsomnia #TheStruggleIsReal

The struggle with having a virtually invisible disease like Arthritis, is that I think people actually forget that I am a REAL patient with REAL symptoms. 
Although I’m doing really well on my triple-combination-treatment therapy, I still struggle daily and experience flare-ups once or twice a week. 
One of my struggles is sleep. 

These days, I sleep about 4-5 hours a night -if I’m lucky- and my current record for the no-sleep marathon is 42 hours. 
I’m actually quite functional on even 2-3 hours of sleep, as long as I sleep well once or twice a week, but lately, I haven’t even gotten that.

My main problem is stiffness. 
I’m constantly getting in and out of bed just to crack my joints. Last night, I even did some “in the dark” yoga because I was desperate, but no cigar. Even though I lay with a hot pack virtually every single night, it doesn’t quite get me comfortable enough to sleep. I don’t know what the deal is! And the only time I actually can sleep is when my body gives out…at really strange times…like when I’m driving or in the middle of a really interesting lecture or during dinner. No bueno! 

For those of you who know me personally, I tend to typically be a pretty high energy person and oddly enough, that hasn’t changed! I just pass out at inopportune times. Then, after a quick nap, my body is up and ready to go again! You’d think that’d mean that I take naps every day, but I don’t, because I want to SLEEP. AT NIGHT. LIKE A NORMAL PERSON.
I’ve even tried losing weight and working out to help my body feel more tired, but again no cigar!

All this is for the purpose of clearing up any idea that just because I look fine, I am fine. 
I am trying really hard and I do feel pretty great a good majority of the time (You should see all the stuff I can do now! 🙂 
However, I think that a lot of people get the misconception that just because I’m on treatment, I’m cured. This is not true. 
I am a real patient with RA who has to deal with managing a life, despite pain and stiffness. I’m a normal person with an abnormal immune system. I’m still figuring it all out.
 This is simply my journey.

The one thing I hold onto is this:
It is not the problem, but how we deal with the problem that truly defines character. 
My problem is Rheumatoid Arthritis.
What’s yours?

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.

I’m TOO Fast, TOO Furious

So, Andres and I went to Coconut Grove Park to get in some exercise and go walking- without my cane– for the first time! I cannot even tell you how amazing it was to see all that I could do. I haven’t been able to walk without some sort of aid, wheelchair, walker, or – most commonly- my cane in YEARS
Walking without my cane for the first time! We had to capture the glorious moment. 🙂

My cane was like an extension of my arm and I would use it to open and close doors, get things off the top shelf, and even balance it in a way where I could lean my buttocks against it and get some pressure off my knees. (Yes, I was pretty creative about figuring out different ways to use it. lol)
There were pros and cons to having my cane. On the one hand, I could walk a lot easier, without so much pain and go further.  But on the other hand, I could only carry one thing at a time. Just feeding myself was a pain because not only was it extremely difficult to carry a heavy plate, but I couldn’t carry a plate of food and a glass of water at the same time as my right hand was being occupied by my cane. Same things goes for doing laundry, I only had my left hand to carry all these clothes so I’d have to make multiple trips and because walking was excruciating, by the time I made two trips to get the clothes to the washing machine, I’d be down for the count.

 Look at me working out my legs! Haha!  

I can only tell you that the first week –at least– without my cane, I felt so outside myself. Like I could carry so many things at once. “So this is how normal people feel,” I thought to myself. Walking to and from places still feels so fast. It’s like when you say, “Pause the movie real quick. Let me get us some popcorn, I’ll be right back,” before, depending on many variables- like the weight of the bowl, the accessibility, my pain level, the swelling in my hands to open the package, etc- it would take me at least 10 minutes to come back. By then, I’ve forgotten what the movie is even about.  Now when I say, “Pause it, let me get us some popcorn really quick,” it’s LITERALLY quick and I’m back in three minutes tops. Ha!

It’s unbelievable! Andres is always singing the theme song from Fast and the Furious, because that’s exactly how I feel now. Too Fast…Too Furious.. Too Fast…Too Furious…”
Andres and his dad, Joyce. Don’t they look like twins?
It still feels so surreal sometimes, as if I am not myself
I can only give a million thanks to my friends and my family for helping me and supporting me through thick and thin.
I have no words to express my intense gratitude to all the wonderful people who dedicate their lives to help people they’ve never met, in order to give them a better quality of life. It’s a wonderful thing!  
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