#RAPOV

Spring is in full Fling!

Published on April 4, 2016 by R.A. POVLeave a comment

It’s already April! Winter was a rough time for my RA, and the season slipped right on by with only one post!

A few quick updates:
I have recently started a new project and hope to show the RA POV via a documentary within the next year.
I soon have a second opinion appointment coming up at a research hospital to see if THEY can figure out why my RA is out of control.
It’s all pretty exciting right now.
oh, and my entire household just got over the flu. the FLU. uuuuugggghhh.

Anyway – more updates to come about this said documentary; stay tuned!

Satan’s Tic-Tacs Save Christmas

Published on December 13, 2015December 16, 2016 by R.A. POVLeave a comment

It’s almost Christmas, and I’m almost ready.

I started early this year. It may have taken me 10 years with this disease to learn it, but I’ve finally learned to start early, plan ahead, work smart because my body might not always be able to work hard.

I had a flare for the entire month of November. I am stubborn. I hate Prednisone. I’ve been on it in varying amounts for a solid two years trying to get off of it completely. Right before Thanksgiving I finally gave in and called my Rheumatologist to let her know the 8mg I had FINALLY been able to successfully dose down to from 60mg, was just not cutting it. After trying a 20 mg burst for five days, I had to report to her that I still could not move my wrists for the first 6 hours of my day, as well as having to sit every 3 minutes when trying to stand, the excruciating pain in my knees which I was unable to straighten, and the most severe fatigue I’ve experienced this fall. She then said 20 mg twice a day. It was like a high! I could stand! I could stretch! I felt 30, not 60! I felt like I didn’t have severe Rheumatoid Arthritis. I love Prednisone.

As of today, I’ve been on a 40mg Prednisone dose for almost two weeks. The “high” has worn off but I still feel alive, like I can move and do small things around the house and take care of my sick kid. I’ve also found some randomly long hairs in some random facial places, had crazy mood swings, sweated profusely, and have had major difficulty sleeping. The worst part? Since August, with exercise and nutrition changes, I have lost 50 pounds.
**Insert applause here if you know how hard that is to do with a chronic disease, small children, and million medicine side effects**
One week on Satan’s little Tic-Tacs and I gained 5 pounds back.

My next directions are to “dose down by 5mg every seven days” – a pretty normal Prednisone ween from my experience. That’s at least 7 weeks on a higher dose of Prednisone just to get back to where I was. And as one RA nurse puts it, I have a very “special” case of RA. I have never been in remission since the day it showed its face (almost 10 years now). My disease is extremely active – all the fricken’ time.

See? I told you I was stubborn… even my disease holds that trait. No biological, DMARD, NSAID, or Steroid meds have decreased the numbers my doc looks for in all that blood work. None. In 10 years. *sigh* So, me and my “special” RA, have an increased flare each time I dose down on Prednisone. That’s potentially seven flares for the next seven weeks. Don’t you just love Prednisone?

Today we are decorating for Christmas. I’m almost ready! And thanks to Satan’s Little Tic-Tacs, I’ll be able to stand long enough to help decorate our little tree, move my hands enough to hang ornaments, and have enough energy to watch my beautiful little boys enjoy some time with their father. I’ll worry about the next seven weeks and side-effects later.

Bring on the merriment.

Dear Grocery Store, Sincerely Mom’s RA

Published on August 27, 2015August 27, 2015 by R.A. POVLeave a comment

I spend a lot of time at grocery stores. My husband works for one and we love lunch dates which usually end with a perusal of the aisles in a game of What’s For Supper. I also love cooking with fresh food so I go often – daily, when RA is at bay.

In all this time spent cruising aisles and sales and all those grocery getting’ gimmicks, I’ve decided that there are some things my local grocers need to know about RA, my RA specifically – but maybe someone else can relate. I’m learning with this disease that it is very relatable. I’m sure someone else out there has been in the grocery store having a rough day and just cuuuuuursing the grocery gods for locating that item in that spot.

Dear Grocery Store,

1.) I would appreciate it if cart corrals were accessible from both ends. I’m hauling a toddler, my eco-friendly reusable bags, holding a six year old’s hand, and hefting a purse – at least – as I limp along… Just let me at the damn cart.

2.) I’m so sorry for the days I leave the cart next to my handicap parking spot. Nobody likes that guy; Nobody wants to be that guy. Somedays, I’m that guy. (Sorry!)

3.) Why are your apples (etc.) piled so high? Have you taken a ride around your store from a motorized cart POV? It’ll change your perspective. Literally. Try it from the hot wheels POV.

4.) Dear Bagger, Lifting things from the bottom of the cart is no fun. That’s why I didn’t put anything down there. Lifting, squatting, grabbing = legs, back, and hands screaming with pain — if my body will allow me to do it at all.

5.) Dear Bagger (again), When I ask you to pack the bags evenly and lightly there is probably a reason (other than being outright difficult) that I made that request. My hands hurt. They just do: non-stop. So carrying those heavy bags is somedays unbearable. So save the eye rolls, and please, just please, don’t shove everything into two bags when I handed you four. (I promise you I hate this disease more than you do.)

6.) Handi-cap accessible Deli counter. I’m telling you. WIN! (oh – and make sure those hot wheels can access it.) It’s embarrassing enough to ride that cart without having to try to stand up from it multiple times, too. Chances are if I’m in that cart, standing up to grab the bag of lunch meat and sliced cheese from you OVER your Deli counter is not an option.

7.) Thank you so much for having drive up grocery loading. PS- Can you send someone home with me to unload them, too?

Sincerely,

Mom’s RA

Dear YMCA Drop-In DayCare Provider, Sincerely Mom’s RA

Published on August 27, 2015August 27, 2015 by R.A. POVLeave a comment

Before I go anywhere with this, I have to say:

I love the YMCA. I Love Drop-In DayCare. I in no way mean to criticize them or their mission in any way – I love the YMCA and our local branch has been immensely helpful in my arthritic plight. I am incredibly grateful to them. This is meant to be humorous.

That being said, Mom’s RA has a few things the young girls working the drop in center should know and a request or two:

Dear YMCA Drop-In DayCare Provider,

1.) Get to the door faster. He only weighs 21 lbs to you – but that’s like 1 million lbs for me at 8:40am before my medications have kicked in, and after getting both of the boys fed, dressed, and chased into the car to get to the YMCA. Just, *sigh*, come open the door. Fast. Please.

2.) I’m so sorry if I’m not cheery and talkative. I’d love to be – I’m sure you’re super nice! …But you honestly cannot imagine the pain that is radiating throughout my entire body. So let’s just limit this chat to the things that will keep my son(s) alive and I’ll be back in one hour with a much bigger smile on my face so that we may resume this conversation of pleasantries post pool time.

3.) You guys are the best at wearing out my incredibly active toddler. I don’t think I could make it through my days without you. Thank you for being energetic and physically capable to get down and play with him. thank you thank you thank you.

Sincerely,

Mom’s RA

RA As My Oar

Published on August 27, 2015August 27, 2015 by R.A. POV2 Comments

It’s been nearly 9 years since I was diagnosed.

Once the initial flare (and utter shock of having a been diagnosed with a chronic disease) passed, I began drifting. I cannot truthfully say I was “very focused” up to that point in my life. I have always just sort of paddled on with whatever came my way, but this was a hard tide to ride.

Over the last nearly nine, RA has deformed both my knees and elbows beyond repair – but Not beyond use, yet, thank everyone’s Gods. Beyond repetitive use? Yes. I have chronic swelling in my ankles that is visible, and my hands and wrists ache every moment of everyday making typing, writing, cooking, hand-holding, high-fiving, and steering my vehicle painful chores. This has happened slowly. I didn’t realize how quickly slowly could be.

At diagnosis doctors basically sat me down and scared the crap out of me without ever once describing the new way of life I should lead; i.e. eating right for my illness and the exercise I should be doing and the genius idea to change careers now before the disease crippled me too badly to do it. Who is supposed to tell us this if the doctors don’t? I was instantly prescribed medications when perhaps a dietician and cooking lessons are what would’ve healed me up. I ate ramen noodles every day for christ sake. No one asked about that. Just, “Here, take this.”

After scared came Sad. “My Life Changed Forever Without My Consent. F*ck.” and because I worked in too many bars with too many Rockstars, mine went like this:
“F*ckity F*ck F*ck F*CK! *Tears Tears Tears*” (Sorry Grandma. Should I go grab the soap?)
Along with some self loathing – “I suck! My immune system sucks! This SUUUUUUCKS!”
And definitely some (okay lots) of pity parties, “whyyyyy meeeeee???!!!”

Anyway, I’m basically passed being angry about being diagnosed and all that jazz. Angry. I just couldn’t believe that after working so hard at FullSail University, after honing my craft and pursuing something I loved and dreamed of – and succeeding, that this God everyone talks about could let this happen to ME – to ME. “What did I do? Wasn’t there some felon that this could have happened to? Honestly. I’m a good person who does nice things and exudes happiness.” (or I was… chronic pain will pull a number on one’s optimism and cheer.)

I already admitted it’s been almost 9 years. Which – quick math – tells me it took like 2 years for each “stage”. So here I am today. 100 pounds heavier than at diagnosis. On 8 different medications. Still trying to find a post-baby combo of meds that will work for me again. Exercising in the pool daily. Yes Daily – no matter how badly it hurts or how fatigued I feel. Eating as healthy as I know how to and can afford to. And mentally? I hope I am on the verge of acceptance. It happened. It’s happening. I can’t control that, but I can control how I care for it and myself, right? Right!

So. I didn’t realize how quickly slowly could be. I really didn’t. Here I am, almost 9 years later, and disease wise I’ve come along way, but career wise? I have drifted. I graduated from FullSail University wanting to design sound effects for video games, etc. Then I moved to WI because of my need for medical care and family to support me during flares immediately after diagnosis which was immediately after graduation. Not exactly the Music Mecca or SFX Capital of the nation. Let’s face it – I moved to Central WI… it’s the mecca of cows and cheese. And now 9 years have passed. Have drifted. I’ve done some cool stuff job wise, but I still haven’t finished paddling with RA as my Oar.

How has RA changed your career path?

Road Trip #FLorBust

Published on March 28, 2015 by R.A. POVLeave a comment

We recently embarked on our very first four person Vasquez Family Vacation. It was the most fun I’ve ever had in Hell.

We chose Florida, during Spring Break Week; Driving the distance with two children under 6. AKA: Hell. On the bright side, we are still married… all children are intact, and we found 46 of the 50 states while playing the license plate game.

I lived in Florida during college, when I was diagnosed with RA. It’s always a little bitter-sweet trip “home” when we get the chance to visit. This trip took us to Walt Disney World’s Magic Kingdom (thanks to our very generous hosts – thank you a million Russo’s!). Well – it took us to about 1/3 of the Happiest Place on Earth because mommy has RA. Next time – I will take a wheelchair!

Because I walked and walked at the Magic Kingdom, two days later I found myself on crutches and unable to bare weight on either knee. yay. Flare. As I never know when it will happen, we had to skip the ocean (St. Augustine) front lunch we had planned to begin our journey home. I felt guilty as heck having my husband give up his first chance to see the Atlantic Ocean, but relieved when he suggested we skip the scenic route to save my body some aching.

Over all, it was a happy, adventurous, wonderful first family vacation.

*pat on shoulder*

Good job, mom.

Disabled? Who – Me?

Published on January 20, 2015January 20, 2015 by R.A. POVLeave a comment

I recently quit my job due to RA related complications.

I love what I do/did for a living. It made me feel valuable, smart, and gave me a chance to really express myself and teach others about something that I love. I’ve been an audio engineer and instructor for just about 9 years. And, not to brag, but I was damn good at it. Music has always been at the forefront of everything I’ve done thus far in life. I used to play piano, saxophone, guitar, flute, trombone – you name it, I played it. I used to tour with rock bands. I used to be physically able to set up sound systems. I used to be able to spend hours upon hours in a recording studio recording and mixing and… loving my career. But alas: RA set in.

So now, I am a college student (again… again again actually) and a SAHM. I am a Stay at Home Mom. Words I never thought I’d utter. I’m about two weeks into this SAHM stuff and it’s been enjoyable. Instead of whiney musicians, I have a whiney baby whom I adore. Instead of late nights with rockstars, I have late night cuddles with the baby. Instead of long hours at the office, I have long hours playing with the baby! Although I have a strong passion for my career, this change has been reasonably enjoyable so far.

Along with deciding that quitting my job for health reasons was the best for all involved, my husband and I had to have a long serious conversation about whether or not I will ever be able to go back to work. Ever. Now that’s a scary thought. At age 21 I was diagnosed and I had to quickly reevaluate every career decision I had made and consider how this disease would effect my future. Well… the future is now! At 30, I am forced to reevaluate once again: Will I be able to return to what I love? Am I making the right decision by studying a different subject now? Is there anything out there related to what I love to do that this god forsaken disease will allow me to do with regularity? I would love to say I chose to stay at home for the sake of the baby, but I was entirely selfish in my decision to stop putting my body through long stressful hours. It just wasn’t working. I was missing a lot of work, and worst of all leaving other people to do my work. Making me feel useless. Ugh. That hurts more than RA in my opinion. It was with this serious conversation that my husband and I decided I should apply for disability. *sigh* Another thing I never thought I’d utter: I am disabled.

I’ve had the application for disability filled out for almost a month now. But I cannot bring myself to submit it. I feel, probably inaccurately, that by submitting it I am giving up: giving up on what I love to do, giving up on finding medicines that will control my RA and get me back to work, giving up the good fight I’ve fought for the last 9 years – pain, swelling, illness related to RA.

I forget that even if I am approved for disability, I don’t (and hopefully won’t) have to claim it forever. There is hope: hope that I will work again, hope that the right medication is the next one in line, hope that I have it in me to keep fighting the good fight for another 9 years.

Hope. I have hope when I look at my children. Luckily that’s what I get to do now: Spend time with my kids. I’m glad to have the chance to let my kids see me be “active” before RA deforms my entire body. So, with Hope, I will submit my application.