Staying the Same in 2018

I’ve decided to make a few small resolutions for the “New Year New You” trend, but have decided that overall I plan to do a LOT of things Exactly The Same in 2018.

I resolve to send more happy mail this year; when I think of a long distance friend, rather than text I will send a note via USPS. I resolve to, for the first time in my life, keep my kitchen table clear of Mess. It’s where everyone drops their everything when they come in the door. It’s always in some stage of Mess. The largest and possibly most challenging resolution I’ve made is to “Have Less Negativity”. This is a complex idea. I don’t only mean lessening negativity within myself, but also in those and that which surrounds me. Sometimes it is as simple as clicking “unfollow”, but other times it means no longer communicating with people who have been in my life for many (many many) years. Negativity is exhausting in any form, and Rheumatoid Arthritis is exhausting in itself. I can’t get rid of RA, but I can reduce the negativity in my life. Negativity also causes me great stress, and my RA doesn’t react well to Stress. (Does anyone/thing really react WELL to Stress??)

While deciding which resolutions were attainable and would benefit my life the most, I couldn’t help but think about what I want to keep exactly the same. 2017 was not exactly a “pleasant” year for my family over-all, but in general I did some cool things I didn’t think RA would let me do, and I learned a lot about myself, my husband, and my kids. So, Stephenie, “What was beneficial in 2017?” I decided I resolve to keep smiling at strangers, complementing random people, dancing while I clean, singing too loudly, quoting Wayne’s World, being my step-son’s strongest advocate, making inappropriate jokes with my husband, texting with my mom far too often, and singing my preschooler to sleep in the rocking chair all are on the “Exactly The Same” list.

Last year I started RAPOV, LLC and its been a journey – for sure. I’ve learned a lot and had to adapt my PT/OT to help me be able to physically do the work! Today, I have to wear wrist braces to sleep to ensure I can continue to create jewelry, photograph it, inventory it, and post it – but #RAPOV has given me a purpose, or a reason, to stay healthy. This brings me to the last thing, and possibly highest on my “Exactly The Same” list, which is donating to #CureArthritis. This organization is leading research to find a cure for arthritis. I keep joking that my donating to them is purely selfish – they are going to find me a cure! But really, there are millions (MILLIONS!!!) of other adults and kids who would benefit from a research break through. So, I resolve to continue supporting them with each and every RAPOV sale.

So here is hoping 2018 brings many smiles – and maybe a cure!

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World Arthritis Day 2017

I don’t write here often, but over on Facebook, Instagram, Twitter and Etsy I’m all a chatter about my plans for World Arthritis Day 2017.

To Celebrate the day, I’ve started a Facebook group for RAPOV, LLC to try to get to know the people who use my product. I can only learn to make it better each time, and who better to let me know what they need in an arthritis friendly bracelet than the people purchasing arthritis friendly bracelets!?

Being a “Spoonie” has made me realize what it means to have a support community and perhaps this group is my way of knowing I have the support of these fine folks who join.

But, my World Arthritis Day 2017 plans are bigger than just one little RAPOV VIP FB group.

A small part of the days celebration is a giveaway. I really like presents. It’s true, I do. Small gifts that say you care. Not just receiving, but giving. Perhaps its my love language or what-not, but it brings me joy to give, and that’s part of how I am choosing to celebrate the day. Any one who joins the RAPOV VIP Facebook Group before my infusion ends at 2:30 CST on 10/12/2017 <- World Arthritis Day is entered to win a bracelet from me! Just ‘cuz. Presents are fun.

 

Ah, the infusion. This is how I am truly celebrating World Arthritis Day 2017. ‘Cuz I know how to party. I am starting a new RA treatment at 1:25pm on World Arthritis Day. I found it ironic when I realized this. Perhaps, it is what triggered all the giveaway-hooha; a distraction?

Simponi Aria. Golimumab. Don’t even ask me how to say that – but, that’s the next one on the list. And friends, my list is growing shorter. I can’t remember if this is #17 or #18 … #19? — You can see how it might get confusing. Biologic after Biologic; fail after fail. Yet, Simponi Aria. That’s the next one on the (ever shortening) list.

So! After that damn infusion ends, I want to go to the post office and send someone a present.

Join the group. Help distract me.

My favorite part of the RAPOV World Arthritis Day 2017 Game Plan is the fundraiser part. As you may already know, I donate to #CureArthritis from all RAPOV sales. But for a day as big as WAD, I’d like to step it up a notch. I’ve been feverishly working on a new line of arthritis friendly bracelets in Arthritis Awareness Blue(s) – (plural because there’s, like, a million shades of blue out there….) – to be released this week. Each item is posted at a reduced price (to celebrate, of course!), and $5 from each item sold in this line will be donated to Arthritis National Research Foundation.

These items are available, you guessed it, in the RAPOV VIP FB Group.

Let’s Celebrate. Let’s celebrate because there is #CureArthritis, #RAWarrior, #Spoonie, #RAPOV — These things exist and they fill me with glee.

Just like a party. So: Let’s Celebrate! Whoop! Happy World Arthritis Day 2017!

Arthritis Awareness Month 2017

Everyday is Arthritis Awareness Day in my world; with Rheumatoid Arthritis its hard not to be aware of arthritis.

Over the past 11 years of living with this disease I have had to come to terms with a lot of things that don’t normally cross your mind if you aren’t living with a chronic illness. Financial challenges above and beyond what a healthy, post college grad, working, 30-something encounters, being the best Mom possible even on days I cannot get out of bed, attempting to eat well and exercise regularly while not knowing day-to-day if I will be able to prepare meals or even stand upright, and trying to nurture relationships while I can barely nurture myself. These are just a glimpse of the way RA has changed me on my journey.

May 2017 is Arthritis Awareness Month and I would like to make you all aware of an organization I came across (and fell in love with) over the past year. While their full name is Arthritis National Research Foundation, they go by #CureArthritis or @CureArthritis and curing arthritis is their goal. Their mission is to “provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases.” 

I could go on and on about the different grants this nonprofit organization is funding for scientific research on finding a cure, but I’ll let you check them out yourself: Arthritis Research.

So why mention CureArthritis on the Rheumatoid Arthritis Point Of View blog? I’m so glad you asked! Upon creating RAPOV, LLC my goal was to donate a portion of my profits each month to fund arthritis research. March 2017 was the first month since becoming an LLC in February 2017 in which I proudly could donate. This month, May, I hope to make an even bigger difference.

For the month of May – in honor of #ArthritisAwarenessMonth – RAPOV, LLC is donating 25% of ALL sales to CureArthritis.org – no matter whether the purchase is made through Etsy, or in person (available at Emy J’s in Stevens Point, WI, and at the Celebrate Spring event on May 6th in Marshfield, WI).

I hope you will join me in supporting their endeavors to CureArthritis.

Please Shop the Arthritis Friendly Handmade Jewelry RAPOV Etsy store here to donate 25% of purchase price to CureArthritis.org in May 2017.

Please Donate directly to CureArthritis here.

Please buy an Arthritis National Research Foundation “Together we can Cure Arthritis” T-Shirt here. (We could be twinsies…)

Thank you for your continued support in raising awareness of arthritis.

Not my favorite “F-Word”

Last month I had what I call a Fucking Flare. The kind of “flare up” where my husband had to leave work to care for not only me, but our toddler because I could not. The kind that fills your entire body with nauseating levels of pain. The kind where all you can do for “self care” is lie there and pray to the Universe that your pain meds kick in soon.

The day started like any other: My husbands alarm goes off at 6:15am, he gets up and gets himself ready for work while I stay in bed and start my RA day. I gently maneuvered under our beautiful but heavy duvet to lie on my back and start assessing the days stiffness and pain. I can feel already as I slowly roll over that my spine is on FIRE. That folks is Ankylosing Spondylitis at it’s finest.

I always start my assessment at my toes. Can the left big toe move? Yes? Success! That would put me off to a good start, but not today. It refuses to move. Attempting motion in that big toe sends screaming pain through my foot causing me to slightly jerk my knee – which I can now feel is also extra swollen and stiff.

“Great – one of those days.” I think to myself trying not to spiral down into a party of self pity and why-me’s.

This realization makes me give up hope quickly and abort my pain assessment mission. I have lived with this disease long enough to know my body. If the toes, knees, back, and hips (the knee jerk also caused stabbing pain in my hips) are feeling rough, every other RA participating joint isn’t feeling well today either.

Quickly my mind races, “What did I do yesterday?” “What did I eat yesterday?” I must solve this mystery of my random RA flare. As I pull my mind back to fixing this problem – so I can get out of bed today – I reach to my nightstand, adding my right shoulder, wrist, and fingers to the list of ailments. I haphazardly move my stiff, painful arm to grab my cellphone and tug. As the whole cable rips from the wall I shudder – I am still an AV tech at heart you know. (I heart cables.)

After this battle with the cable, I set my phone on my chest and rest my arms like I’m in a casket over the phone. And I let a few tears fall. So. Much. Widespread. Inflamation. And. Pain. I take a few lamaze like breaths, open my teary eyes, and lift the phone to text my husband.

Now realizing my thumbs are too stiff for texting, I use my nose to push the little itty-bitty microphone button on the bottom left and wait for the “ding!” before whispering “help” into it. I could’ve just screamed “HELP!” when I first felt the pain and he’d probably be here by now, but the children would also wake up. A flare doesn’t stop for kids… and kids don’t stop for a flare. So, I gently maneuver my thumb to press send. And go back to my casket position – exasperated. I think to myself, “Fuck – there goes all my spoons” and giggle in my mind. Not out loud. I can’t waste these spoons.

At this point my eyes are closed and I’m trying to just focus on breathing so that the pain doesn’t make me vomit. It feels like forever, but when my love arrives I can see my phone says 6:30. 15 minutes!? I’ve only endured this for 15 minutes!? I try not to cry as I tell him what’s happening. Channeling Strength. *deep breathes*

Corey knows when I’m lamazing it up, I really need him. He quickly gets my pain meds, turns on the heating pad and puts the switch in my hand before going to get my icepacks. After returning (I love this part:) He kisses my forehead (awe) and then goes to finish getting ready for work and get the boys up and going.

Some days that start like this get better quickly. But considering this flare has already been disclosed as a Fucking Flare, you can bet today wasn’t one of those days. As I listen to the boys head downstairs to eat with their daddy, I lay silently in tears that I simply cannot hold back which are running into my ears. “Where mommy go?” I can hear my babe say. Now I can add my Heart to the pain list…

Eight icepacks are freezing my body, but the duvet is too heavy for me to move them. At some point Corey comes back up and moves them around for me as requested. Kisses me again and asks if he should call in. I say no. I’m fine. We both know it’s a lie but I still am hoping a few more minutes and the meds will be enough to get me upright and on the couch.

By 8:10am he’s gotten both boys fed, dressed, and entertained until the oldest ones bus arrives at 8:50. I have laid in bed for two hours and 5 minutes trying to gently move anything that will budge just waiting for pain meds to kick in. Please please please kick in.

It’s time for Corey to leave now; he helps me out of bed in the most gentle, slow, assisted motions we can manage. (Have I mentioned how grateful I am he’s chose to be a nurse when he finishes school? Nurses for the win!!) As we limp past our 7 year-old’s room I see him quietly reading on his bed. I try to hold back my tears and fake a smile, “Good morning, Love” is what I can weakly muster up. “Good Morning, Mommy!” he says with such enthusiasm. Man, I envy that enthusiasm.

And down the stairs we go. All 13 of those asshole steps. When we moved here I wondered if they would be a problem but it had been eons – ok, a few months – since I’d had a Fucking Flare. A few little flare ups, but nothing major like today. So, I thought it would be ok. Let me tell you this: In that moment, right there, as my husband and I tried to figure out how I could get down the stairs with knees so inflamed they couldn’t bend far enough to reach the next step, I decided it was NOT ok.

Stairs = Not Okay.

Ok – Focus. Stairs. Must get down. I lean gently against our wall opposite the railing, put my arm around Corey’s shoulders and sort of half step/half fall onto each of those 13 freakin’ stairs. Each one takes what seems like a minute. Each landing sends pain rippling up from my feet into my ankles, shooting through my knees and landing ripely in my hips, SI, spine. Each time I land my shoulder is jarred which sends blinding pain from my wrist to my elbow, through that shoulder up into my neck. The noises I am making have made both kids come to the stairwell to see what on EARTH is happening.

“Go do your thing, guys.” Corey says sort of shooing them away with a hand motion.

“Only 10 left, Stephenie.” I think and Channeling Strength once again as we make it to the landing and turn the corner. Breathe. 6 left. Eventually we’ve made it, but without my phone, heating pad, and icepacks. Corey gently sits me onto our love seat with pillows propping my tender, stiff joints, and returns to get my aids.

When Corey finally goes (20 minutes later than he normally does), he puts the baby gate up to keep the toddler confined into the living room with me, puts food rests around me to keep the toddler off of me, makes sure I have my phone in reach. He leaves diapers and wipes next to me, and lastly kisses me before disappearing for the day. “Call me if you’re not better in an hour,” he says. “I love you.”

8:40am rolls up shortly after he’s left. I take the deepest breath my weak body can manage and yell up to Xavier “Bus Time!” I listen for the thumps of his feet putting away his book to make sure he’s heard me. Thump thump thump, and a whole lotta rumble as he bounces down the stairs.

“Are your owies bad today, mommy?”

Channeling more Strength… “Yeah babe, I don’t feel well today.” don’t cry… don’t cry… Streeeeeennnnngggggth.

“Oh,” he says then makes his pensive thought face before saying “I’m glad Quenten gets to stay here and take care of you!” and off he bounces to pack his backpack.

“Mommy? Where is my lunch?”

…oops. I forgot to make his lunch last night. He has a special diet to aid in his ADHD, so “hot lunch” are not words he’s used to hearing. But right now, getting up and making that cold lunch sounds FAR more painful then dealing with him in his own sort of ADHD flare up later today.

“How about you have hot lunch today?” I try to say with upbeat enthusiasm. It is received with even more enthusiasm (and more 7 year old chatter) as he gets his back pack, snow pants, and other winter gear ready. Chattering about something the whole time. Honesty Time: I’m in too much pain to actually understand – or even care – what he’s rambling on about in a nonsensical giddy manner in the other room. As long as he sounds happy…

“BUS! Bye mom!” “Love you sweetie!” and he’s gone. There is a moment of silence where I close my eyes and slowly exhale, reveling in the fact I’m down to one kid now. One on One. Maybe I can make it without calling Corey home from work. (We can’t exactly afford him to miss work with me not able to work in general.) I close my eyes to recuperate as the toddler watches Bob the Builder.

I try to avoid thinking about the pain and instead focus on the nice warm heat of the heating pad, listen to Bob and friends, try to think of happy things, put a little smile on my face (I’ve heard it helps with pain… so why not!), and try desperately to “relax” through the pain.

WHACK!

“MOMMY! MOMMY PLAY QUENTEN! NOWWWW! Peez?” Quenten yells into my face. He climbed the foot rests barricading him from me and smacks me in the face before falling onto me. I gasp, resist screaming, and open my eyes to meet his beautiful blues staring right back at me with a big ole smile on his face. I smile and gently ask him to get down because I don’t feel good. Then watch as he responds by hugging me and sliding down.

He sits on the floor next to my propped up love seat spot and reaches up his hand to tenderly touch my foot. He is barely resting his hand on me, making a short petting motion, and it hurts. He is too darn cute for me to tell him it hurts.

Ok Pain meds… ANY time now would be great. Time. What time is it? iPhone says 10:05am. And now I have to pee, my stomach is starting to growl… it’s now or never I decide.

I try to use my hands to lift myself off the cushion to scoot my butt, but my wrists are unable to bend far enough, so I try to reach with my elbow to the arm of the love seat, but my back won’t turn far enough for that to work either. I decide to try rolling a little and maybe my legs will bend now. Success… I am sitting with my feet on the ground. I have never been so glad my father rebuilt the legs on this love seat to make it taller for me and my silly knees as I was right then. I lean my head back on the pillow behind my head, and take a few reassuring moments and prepping breaths before leaning forward, with my arms as straight out at my chest as they go, into sort of a half squat position and try to gain balance before standing “up”. Which, today, is sort of a half hunched over, barely balancing, version of standing today.

Cane! Did my husband leave me my cane? Yes. Right next to me. Oh god bless that man!!! I delicately grasp my cane and try to straighten my legs out as much as they can so that maybe I can walk to the bathroom. Slowly: Tiny restricted-step by tiny-restricted step, I make it. I bring my phone and call him after I’ve landed on the toilet.

“I can’t do it, honey” I blubber into the phone when I hear his voice.

Soon he is home. (Thank freaking god.) He gets me back into bed, propped up, feeds me prednisone and more pain meds, brings me lunch, and goes to take care of Quenten.

“So much for existing today, I guess.” I think feeling fucking useless as I drift off into a pain med induced sleep.

Fucking Flare.

Approved or Denied?

My SSI Disability hearing has finally been scheduled… and I am terrified. I am terrified with either way the decision could go: Approved or Denied.

I am terrified the judge will deny me, and dismiss my chronic life.

I am terrified that approval will make me feel Disabled.

I am trying not to live everyday in this fear, but that doesn’t mean it doesn’t sneak into my mind from time to time.

I have told myself, my family, and especially my husband, that applying for disability is not my way of giving up. It is my “safety net” in case I ever become this ill again. I am still recovering from a severe systemic flare that started during my pregnancy with my soon-to-be 3 year old. When I remember back to what I felt like when he was born, it wasn’t joyous. It wasn’t precious. It wasn’t something I remember fondly. I almost died. He almost died. I couldn’t hold him. I couldn’t care for him. It was, to put it lightly, Not Good. It’s still not great, but we have found ways to survive, and I have made many efforts to get my RA in check.

His birth was not my first bout with a long, debilitating, ridiculous flare since my diagnosis 10 years ago. And I am terrified it won’t be my last, considering this one is still ongoing for 3 years plus! (yowza!)

I want to work; I am DAMN good at what I did… not to be boastful, but this is why I have fought so hard to get back to where I am today — physically and mentally. I’ve always been stubborn, and a fighter if you will, but I’m also smart. I plan ahead. I constantly have “what if?” running through my mind. And the “what if?”‘s of RA can be terrifying. Thinking like this keeps me prepared: “Plan for the Worst, but Pray for the Best”.

 

New Adventures of Yore

I recently discovered thousands of beads and beading accessories during my household move. About 7 years ago I had an Etsy store, sold my handmade jewelry at salons, and a few craft fairs.

But, alas: RA “took this away” from me about 5 years ago. My hands simply became too weak, and I was so ill I had no creative juice to speak of.

For 3 years I have done OT strengthening and stretching daily.
Multiple times a day actually.
(Along with other sweeping lifestyle changes to support RA…)
And it has finally paid off!

I launched a new Etsy store just before Small Biz Saturday 2016!

I cannot describe the Joy I feel by regaining this small piece of me.

If you get a chance, please, check out my Joyous creations at RAPOV on Etsy.

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RAPOV on Etsy

Happy Anniversary!

On September 9, 2006 I received my Rheumatoid Arthritis Diagnosis. In 2006 I was 21. This diagnosis, and extremely sudden and severe onset, rocked my world.

My close friend of many years was recently diagnosed with Multiple Sclerosis. She “celebrated” her one year anniversary of diagnosis the day I “celebrated” my 10th. This got me thinking about the past 10 years: How I’ve changed, How my RA has changed, How my RA has changed me, How time changed… you get it. Thinking in-depth about life.

Once upon a time, I was a brave 19 year old who followed her dream of being a female in a male dominated field: Audio Engineering. I graduated on September 1, 2006 from Full Sail University. Seven days later I woke up and couldn’t walk. No joke: Knees suddenly did not bend or support weight. I was broken, physically. Sudden onset of RA was diagnosed on 9/9/2006. Eight days post graduation. I was broken, emotionally. Despite my crutches, pain, and fatigue I completed my internship with i.d.e.a.s. (a now media company). Once while at my internship, I was rushed to the ER in Celebration, FL for an EKG from a 100mg Prednisone burst. Now that I’m familiar with the drug, I could slap the woman who prescribed that burst to me.

In January of 2007 I started interning for Walt Disney Entertainment’s music department. This was by far the coolest job I’ve ever had… and I so wish I hadn’t been so, so, sick. In 2007 I also started 5 medications for my RA: Naproxen, Darvocet, Methotrexate (in pill form), hydroxychoriquine, and Prednisone. None really helped, and they all hurt my stomach. Oh – My poor stomach!! 2007 is the year I wish someone would have told me of the link between gut health and RA disease activity levels. (This took 8 more years!) 2007 also was the year my knees became so badly inflamed that I gave up working and living in my transplant state of FL. I moved home to mommy and daddy and central WI because I, a “grown woman” of 22 years, needed to be taken care of. This was the hardest summer of my life. I spent days in bed crying from the pain, from not understanding the disease, from the devastation it brought to my life; wanting to sleep it away. In 2007 I tried to kill myself, twice.

By 2008 I was on enough medications to work again. I had a job I hated, not related at ALL to my education but it was at a desk! and it paid. Eventually, I got brave enough to try my art again: Audio Engineering. In 2008 I met the ever awesome Todd Campfield and started my new career path into live sound reinforcement. At this point in my RA journey only my knees hurt. It was just difficult to kneel or bend a lot. So I set up sound systems, I mic’d drum sets. I did normal stuff: I lifted 75 pound speakers above my head. (Which today, sounds like something I’d have to be crazy to even attempt…) It was a cool gig. I also got a house engineering position at a local venue. Life was good. The more I worked long physical hours though, the more my body started to show signs of inflammation and disease activity. In 2008 I started Humira. It was my miracle drug. On Humira, I was able to work full time, return to college full time (I knew my body couldn’t do this forever even then, so I knew some business education might come in handy), and even take care of a house and boyfriend.

In 2009 I continued my education, but also started teaching about what I loved! (Maybe this was the coolest job I’ve had.) Rosholt School District! How I love thee! They gave a chance to this gimpy rocker chick with a mohawk to lead their Auditorium Technology Crew as Technical Director. This is when I discovered my love for leadership and sharing my passion for audio. I had a couple students who really took to the information I was feeding them. I proudly had the chance to HIRE them as techs at my next job – but we will get to that. In 2009 I did pretty well medically; Humira worked wonders. It never let me down as long as I remembered to inject myself. I also had a knee surgery in 2009 to attempt to relieve some of the constant swelling in my left knee. To repair the meniscus was the goal, my body attacking the new scar tissue the reality… enter permanently deformed knee. (That’s normal for a 29 year old, right?)

In 2010 I was mixing audio, going to school full time, teaching at the high school and surviving it all. 100%! I don’t remember being in pain as much as I am now. I know I had prednisone bursts for flares. I know I cycled through a few other pills. But I remember 2009-2011 as the “good years” since diagnosis. It took 3 years to find meds that worked, and they worked for 2 years. That’s not math I like to add up… but I can’t be any more grateful than I am for those 2 whole years. (Or any good day for that matter!)

In 2011 Humira stopped working. Just boom: flare after flare after flare. So, I started a new med in December: Actemra. In 2011 I gave up mixing live sound and touring. It had become too physical. I could no longer bend numerous times to set a mic, or stand all night to mix, or survive the fatigue that rolled with 12 hour nights on my feet. I gave it up because reducing my standards wasn’t an option. I’d find something else I could still do.

In 2012 I wed the love of my life, his sweet baby boy moved in with us, I potty trained sweet baby boy, and I returned to yet another college: UWSP for Media Production. All while trying to find a medication (or two…) that helped, but said events did not necessarily go in that order. 2012 was a wild ride kind of year! In 2012 Remicaid worked rather well at slowing my now rapid spreading RA: knees, hips, ankles, and spine. This is when the Ankylosing Spondylitis diagnosis was given. (“Ah-nah-ka-wha-wha???” was pretty much my response.)

In 2013 I started working at UWSP as the student manager for their Audio Visual Department (Program Services). (Maybe this was really the coolest job I’ve ever had…) This is where I had the honor of hiring two of my previous students, among many other talented young AV techs. It was stressful going to class, being sick all the time -RA and constant illness due to lacking immune system and the morning sickness. Oh yeah – in 2013 I became pregnant! (Yay babies!) I had read that 85% of women with RA go into remission while pregnancy, so I thought “Hell yeah! I could use a break from this!”. Turns out: I’m the 15% that don’t go into remission. I went through hell. I decided to stop the Remicade for fear of what those chemicals pumping through my body was doing to my growing fetus. I was put on predisone at 12 weeks – that’s pretty early in a pregnancy to use prednisone I’ve been told since. I missed a lot of school. I missed a lot of work. I missed a lot of life. My entire body was nearly ridden with severe RA. It was basically a year (during pregnancy and after giving birth) of only having the energy and physical ability in a day to wake up, eat something, cuddle with my step son if I could, and then sleep more. A year!

On February 3, 2014 I was rushed to St. Joseph’s Hospital in Marshfield, WI to deliver my son who was due on April 15th. At 2:38pm on February 5, 2014 I delivered my son at 31 weeks and 1 day. (That’s about 10 weeks early for my non-pregnancy-mathers out there.) I had been sick, yellow skin and vomiting, for about a week prior to the hospital rushing. My husband forced me to go to the walk-in on the 2nd, and on the 3rd I was rushed to deliver due to a liver on the fritz. It was apparently done helping me grow this baby. On the 5th Quenten was born at 3 pounds and 11 ounces. He was one of the larger babies in the NICU, as scary as that fact is. Aside from a few short illnesses, failing to breathe while sleeping, and needing oxygen almost constantly, Q did really well in our NICU stay. For 9 weeks I stayed at the Ronald McDonald Charities house across the street from the NICU. For 9 weeks I was “high” on adrenaline and post C-Section pain killers. I didn’t realize how badly the stress and lack of sleep was effecting my RA. At one point I saw a “high-risk” obstetrician with much RA experience who gently held my hand and told me never to try this again – for it might take my life, or the babies, next time. (I literally think I’d be crazy to try it again.)  I returned to class and work months after the ordeal had begun, and ended. I hadn’t intended on taking so much time off – but my son had subsequent PICU stays his first year of life and my disease was more than “going crazy”. We had five PICU stays to be exact. Totalling 38 days. (That’s a lot of nights in a hospital. Sleeping on a cot. With RA.) At school I found myself not getting the “A-” level grades I’ve held my standards to thus far in life. Instead I was receiving C’s. And Doing a “C” level job at work, too. It was all becoming too much. I had become too sick. After birth and breastfeeding I tried Remicade again, to no avail. I had built up anti-bodies to it and it no longer helped me. So we tried another medication. and another. and. another. …

In 2015 I decided to quit working because I could no longer do it all. I was constantly sick, with a weak immune system and RA flares, and I just couldn’t do it all anymore. I decided to try eliminating one major stressor at a time. My job was a work study job, so I couldn’t stop going to class and keep my job; and my kids sort of need a mother so I couldn’t quit that. This that left me with the choice of quitting work and focusing on class and family, and my health. I applied for SSI disability in January 2015 when I was no longer able to work and was denied. I appealed and was denied. I hired a lawyer and was denied. (Currently, I am waiting for my case to be in front of a judge.) By spring of 2015 I was nearly failing all my classes – something this Stephenie Susan Vasquez does NOT do – and I succumbed to the diseases needs: I dropped out of college to focus on my health. In 2015 I learned to cook and eat and live according to the Auto-Immune Paleo (AIP) diet. In 2015 I started water exercising everyday. In 2015 I lost 55 pounds due to life style changes. In 2015 I started using Methotrexate again. I was still on prednisone, and I tried Otezla.  Otezla helped with the weight loss due to massive sickening side-effects.

It’s 2016 now. Almost 2017. This year I started Rituxin. I’m about to get my next dose in October. I’m still not sure how I feel about that, but I can tell you I wish this musing was telling you more about how I am finally recovering, FINALLY after 10 years: in remission… or how I am back to rocking and rolling this world as an Audio Engineer. Maybe my 11th year anniversary will have me back to work, back to life, back to me. I am still living an AIP lifestyle, exercising daily, and have finally got a pleasant grasp on how to balance my days out to have the energy and physicality to complete each day. I hope to continue this quest for RA knowledge, and keep gaining friendships through the shared comradery I’ve found online.

So to my RA, I say: Happy 10th Anniversary! (And many more until there is a cure…) Cheers, RA, to all the things you’ve taught me in your horrible mysterious ways. Cheers to all the things I’ve still accomplished despite your hand gripping me tight. Cheers to the next 10 years of growth you will bring into my life.

Questioning RA

Each morning I wake up questioning my RA:

Will my feet be able to walk? Will my knees be able to bend? How excruciating will the pain be today? Will I be able to waddle to the bathroom fast enough? Will my hands be able to grip my phone to turn off that damn alarm?

It continues through out each day:

Will my arms bend enough and be strong enough to lift my 25.5 pound wriggling toddler into his high chair? And IF I get him there, will those hands be able to open his yogurt? Change his diaper? Dress him for the day? Hell – dress MYSELF for the day?

Some days the wondering takes a negative turn:

Will I EVER feel better? Will I ever be “me” again? Will I ever be able to work again?! Why me? Why now? Why – why – why!?

Some days I can keep the line of questioning positive:

How is this making me stronger, better? How can I help others with similar situations? How can I make the masses more aware of this disease? How can I help? How can I turn this into something good?

But the questions never end:

How did this happen to me? How can I STOP this!? How am I supposed to work each day when I am physically unable to get myself dressed some days? How can I tame the invariability of my RA? Can I control this? Is this Medication working? Are food allergies causing this flare? Does this disease make me a bad mom? Will my kids resent me for this disease? Does my husband still love me through this daily disease? Am I *really* trying my hardest? Have I balanced rest with activity equally today? Did I remember to take my meds?

On and On and On these questions run through out my day. Each night ending with one more question:

What will my RA be like tomorrow? 

Rituxan: Plan M

I’ve started a new-to-me medication, Rituxan. It’s infused twice over a 15 day period, twice a year. Basically, I consider it my mom day because my ever-wonderful husband must request the day off and spend it with the kid(s) while I relax. So rather than seeing it as a medical treatment – and all the needles and chemicals and nurses – I see it as Four WHOLE Mom Days a year (naps included)!

The first infusion took over 6 hours once I was seated in the infusion area – thank the heavens they have HGTV for my Mom’s Day. The second will hopefully take less time; knowing I am unlikely to have a bad reaction to the medication, it may be infused faster into my blood stream.

There have been so many I forget them all, but I do believe this is the 13th medication I am trying to control my RA in a 10 year period; Nine and nine-twelvths years actually. (Three-quarters – whatever this isn’t about math! and the word twelvths is cool…) At this point, I am hesitant to be hopeful for it to work, as 12 others have come, gone, and not helped. Yet, if I don’t remain hopeful for success, why bother trying? It’s a conundrum in my head.

It is summer here in Central Wisconsin, which means less pain due to more sun and less snow! hip hip hooray! I have been feeling “well” – I use that term lightly. I have been able to survive each day with out wanting to die, or being crippled by pain so badly that I can hardly walk room to room, couch to couch, chair to chair… which is good. So – I can easily say I’ve been feeling “well” on my RA scale of normal.

My question is, “Why Do I Feel Better? AND How can I make this continue!?”:

  • Is it the weather?
  • The medication?
  • The Essential Oils I’ve been trying?
  • My Diet?
  • Sugar intake?
  • My stress level? (scratch that – its summer time and I have TWO kids at home to plan for now… stress level high!) 

With so many factors, I turn to science (specifically blood draws and experienced professionals) to tell me if this medication is working. With one infusion down, and one more to go next week … patiently I wait for 3 more months until a blood draw is done to tell me if my disease activity has lowered.

If not? Onto plan N.

Nothing

My husband absolutely (and unintentionally) broke my heart the other day. We were talking about our days and what we do, and when I asked what he thought I did everyday he said “Nothing”. With out skipping a beat: Nothing.

Wow. As if I don’t feel bad/guilty/useless enough about the amount – or lack there of – of things I am able to accomplish each day with this disease. Suddenly I felt like Nothing. It was a slap in the face. Here, this man I adore and do everything I can for, the man I try daily to make happy and encourage and feel loved, the man who agreed to love, support, and understand me … thinks I do Nothing each day.

I immediately thought “If that’s what the man who LOVES me thinks – what do people who DON’T know me think??”

I’m a Stay At Home Mom with Rheumatic Disease: getting anything done in a day is amazing, a blessing, and means I am having a DAMN good day. I have had to dramatically reduce my standards and expectations of myself over the last 10 years, and especially over the past 3 years since my disease “went crazy”. I wish everyone understood that I do everything I can in a day. Yes, some days that means I spend 6 hours icing/heating my deformed painful joints … and avoiding all housework. Yes, that means somedays I feel good and am able to put away the dishes AND reload the dishwasher (yay!). Some days I can even grocery shop AND cook in the same day! (Can I get an AMEN!) Days I feel “great” are rare, but I love days like that because it makes me feel a little more like my old, overachiever, self. “Good RA Days” makes me feel like I’m not Nothing.

My husband helps around the house, mostly when he feels like it, but I can’t complain: he helps and I need help. (Some people aren’t even this lucky in love.) My husband helps with the kids, often – he’s a pretty great dad. I can’t complain: my kids know they are loved. (Some people aren’t that lucky in co-parenting!) My husband has seen me cry like an infant because my hands won’t grip a pen; he has helped me get to the bathroom from our bed when I can’t walk; he has seen me lose my career, my physical abilities, my self-esteem, and my self-worth. He knows. He knows what I live through each day. Perhaps he’s grown immune to it from over exposure, but that comment still stuck like a dagger: “Nothing.”

Upon waking, I never know what my body will let me do – but I certainly can tell you “Nothing” is never on my ToDo list.

 

***I think I need to add to this post a side-note that immediately after saying “Nothing” my loving husband tried to gobble up his words and honestly meant no offense by it. (He’s a nice guy. He loves me, disease and all.)***