100 Miles in May: May 1st

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So me and two of my crazy friends are taking the 100 Miles in May challenge.  Transparency- it may be a local challenge per our discussions or it may be a challenge that someone told us about that isn’t really a ‘thing.’

Whatever.  We are making it a thing.

Rules: 100 miles walked in May recreationally, measured by Fitbit or whatever other app you use.  Recreational miles meaning steps you take doing whatever you do all day don’t count. 

Our ‘modification’ to it: we need to have a way to make it fun.  Walking aimlessly for roughly 3 miles everyday sounds awful. So we are turning it into ‘urban exploring.’  Walking through neighborhoods/roads we drive through everyday and trying to notice the things we don’t notice in the car.

My RA slant: I will be updating you on how my body tolerates this.  My friends are pushing for 3 miles a day; I’m pushing for what I can safely handle.

We kicked off Day 1 with a walk through the neighborhood we live in- Dilworth in Charlotte, NC.  We walked up Tremont from Park Rd to South Blvd and back.

It was fun window shopping all the cute bungalows!  And the smells and sounds that I miss daily when I’m in my car.


I haven’t smelled honeysuckle in years, and had no idea it was the neighborhood ‘scent.’

There was also a ginormous Rosemary bush in front of another house.  I rubbed my hands on it in passing and am googling if that piece of land is city property or can I come back with scissors for cooking purposes?


Our neighborhood loves pets!  We saw this dog bowl and also several homes that had little stands out front with water bowls and dog bones.


This dogwood (?) made us feel like flower girls and reminded us of the swan scene in The Notebook.  Hey Ryan Gosling- wanna canoe us somewhere? Anywhere??? 


Finally, rope/tire swings are still a thing.  This one is cut to look like a horse although I couldn’t get a better picture of it because I looked stalker trying to take this one.

Today, we walked 3.2 miles.  My feet and knees/ hips held up fine. I did have some swelling in my hands today. I googled it and apparently that’s not unusual- blood vessels do something to keep up with changes energy demands yadda yadda yadda.  This is fine BUT having hand swelling in joints that are already swollen is painful. 

We stopped for a water and a margarita on the way home and I had a hard time picking up the glass, even with both hands.  It went away fairly quickly, but it sucked. 

I’m hoping this goes away as I get back into shape. I’ll try to get a picture if it happens again.

How did the walk end?

Electrical showers. Of course.  Thankfully, I was near a pizza joint that my friend owns and he made one of his delivery drivers drive me home!

I’ll be updating on my progress as I go, and am really trying to not let this be something I’m into for a week and then never again.

Anyone want to virtually join me?

It hurts so good

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In keeping with trying to love and take care of me, I recently started lifting weights again.

To be fair and completely honest, I haven’t been as consistent as I wanted to be at all of this.  I am a work in progress.

But the other day, I downloaded a workout app my friend sent me which was for weight training at home.  I own a kettlebell (15 lbs) and two Dumbbells (10 lbs each).

I looked at the workout the app generated for me and was all yassssss! This should be easy!!!!

It was not.  It was a squat series.  5 different exercises focused on glutes.

I finished it quickly and walking upstairs to shower, I realized I had jello legs.  4 days later and it still hurts to stand up and sit down.

But this hurt is a good hurt.  I’d forgotten how much I like a good hurt!

In other news, I made the hard decision to switch to a rheumy here in town.  I LOVE my rheumy from Greensboro but it takes a whole day to drive up for an appointment and it’s so hard to fit into my schedule.

He referred me to one of his med school friends locally and I had my first appointment recently. So far, so good.

We are staying course for meds but she is concerned (as am I) about my wrists.  I am working on cleaning up my diet as we both noticed that the best I’ve ever done was when I was completely gluten, dairy and sugar free.

That wine I love though…

But if cutting back to 1-2 glasses per week keeps me from more meds or worse, that’s ok.

Funny story- I went to the lab after my appointment and told the tech ‘take it from my left arm, my right arm rolls.’  

She looked and felt on both arms and told me she’d prefer to try the right arm.  I grimaced- I know my body but I also have a high pain threshold- and said ok, you have 1 shot on the right.

She prepped the right arm…and dug…and dug…and dug.

Finally, I said try the left for Gods sake!  

She accessed the left arm in one try, even though it ‘didn’t feel as good.’

Note to all of us: stick up for the veins that are painlessly accessed! I am pretty sure I made my point but boy, that was not fun. 

So all is good here, no med changes, following up in May.  Say good thoughts for my wrists and for me having the moxie to stick to this diet.

I’m already having dreams about linguini…

An open letter to Bill Maher

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Dear Bill,

I normally would not grace comments such as yours with a response because I consider most random comments like these from folks without platforms as bottom feeders. People who feel the need to denigrate a whole population because of their ignorance.  

Your quote via Twitter regarding the SuperBowl ad for a medication to help opioid induced constipation so beautifully states: (your words verbatim, not mine)

 
Really Bill? REALLY?

Have you ever spent time with patients on long term opioids?  Have you walked in their shoes and truly understood what it takes for them to function as somewhat normal human beings on a daily basis? I have.

I live that shit every day.

I invite you to contact me personally. Or any of us! You can speak to my friends, family, boss, coworkers and clients.  I will sign off on you conducting references on me for all of those categories.  Hell.  You can even contact my doctor.  Or accompany on my next appointment to understand what us ‘junkies’ deal with on a day to day basis. Please, no really PLEASE.  I’d love to for you to in person attend a doctors appointment with me.  I’ll waive all that HIPAA shit so that you can see, hear and feel where all the swollen joints are.  Look at X-rays.  Maybe see a real time ultrasound to see first hand the joint damage that I deal with daily.  Hear from me in a completely candid setting what hurts, where it hurts, how often it hurts.  And then hear from my doctor what we have to do to make things feel better.

Pretty sure with that alone, you’d understand the need that chronic pain patients have for long opioid  use.

But to really drive things home, I invite you to spend a day or two at work with me.  Shadow me.  I’m not sure if you could keep up.   I won’t elaborate on my specific position on my blog but suffice it to say, I am damn productive and I am damn successful.  I bust my ass.  You NEED me working.  I am very good at what I do.  And I am functional because of the medication that I am on. How dare you suggest that, as population and by calling us ‘junkies,’ we are none of those things.  How dare you.  I work harder than many I know as do many other patients I know for two reasons: we need to prove to ourselves that we can and we must remain employed to maintain insurance.

How dare you.  In that one stupid tweet of yours, you try to invalidate and mock all of the literal blood, sweat and tears this ‘junkie’ has invested to be successful.

Sure, there is a minority of folks that abuse the medications we take.  But it is just that: a minority.The majority of us are doing the best we can with the hand we’ve been dealt and the resources we have.

Calling us all ‘junkies’ is irresponsible and highly offensive. I’ll even go so far to ignore the crassness of your statement.  It is offensive but also uninformed.  

Don’t be a pussy, Bill.  Reach out to us and correct your uninformed views. Correct your ignorance.  

Signed,
The ‘Junkie’ who is anything but

What it’s like when your hometown team is in the SuperBowl

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Making a quick departure from my usual subject matter because after all, RA patients are still people with interests and passions outside of RA.

Tonight is like Christmas Eve when you are 6 years old.  You just want tomorrow to be here so badly and you know that you have to sleep to make it come more quickly.  But you are just so dang pumped that sleep will not be easy.

I live in Charlotte,NC about 1.5 miles away from Bank of America stadium where my Panthers play.  I knew I was close when I moved back last summer, but didn’t realize just how close until the first regular season home game.  I had the TV on in my living room as the National Anthem was playing, and all of a sudden there was this crazy loud rumble that kept getting louder.  It seriously sounded like an airplane was landing in my driveway!  

It was the Air Force flyover during the National Anthem. 

  

(View albeit blurry from my back porch.  The stadium, while you can’t see it due to trees, is on the far left by the big building that looks like Voltron with blue lights on it.)

Whenever there are flyovers, I now step outside to watch if I’m at home.  And when there are big wins (like the championship game 2 weeks ago) that are followed with a huge firework display, I get to play my favorite game: gunshots or fireworks.  To be fair, I live in a good area of town and it’s almost always fireworks.

I digress.

Ever since we won 2 weeks ago and secured a spot in SuperBowl 50, I just wish I could bottle the energy and vibe to share with everyone.

My friends and I went to the stadium last Sunday morning to see the players off.  We were there 2 hours early and the streets were already packed. Everyone was in team colors and just being so lovely to each other.  High fiving, hugging, cheering.  It was so inclusive and just infectious.  We saw many of the players arrive and/or get dropped off by family.  I saw Cam’s crazy Versace pants from a distance.  Everyone who drove through those gates got cheered.

The sense of community and energy when the buses pulled out with our players gave me chill bumps.  I’m not a big cryer but I will always remember how cool it was to be a part of such a huge, rather impromptu show of togetherness.

This week, I wore black and blue all day, every day. As did pretty much everyone else.  Even most of the buildings in our skyline are lit blue right now. Friday was jersey day and I wore my jersey to work, as did pretty much everyone else.

Excitement like that is equalizing. Everywhere you went, you would compliment others team clothing and they would compliment yours.  A guy at the light rail station by my office on Friday (who is a complete stranger) high fived me and my coworker and we discussed our Sunday plans.

I met some friends for Happy Hour last night at our dive neighborhood bar. It was packed, and just so celebratory.  Black and blue, again, everywhere. People have never been friendlier.

I think the answer to the question ‘where is the most Bronco friendly bar’ is…in Denver.

I went to brunch this morning and people were yelling at other folks who showed up in team colors.  What were they yelling? Go Panthers! Keep pounding! I started laughing as I overheard a woman telling the man with her that she bought blue hair extensions to wear tomorrow.  She heard me laughing, complimented my scarf, and told me where to get them.  (I’m not doing extensions, for the record.)

Driving home, I don’t think I drove past a single person outside who wasn’t in a shirt, hat, scarf or at least colors. 

All of this to say…I don’t know if this is typical or not because having our hometown team in the SuperBowl is a new experience for me.  The only other time it happened, I didn’t live here yet.  But good grief, I am so proud of the infectious enthusiasm, camaraderie, and friendliness this has brought to our city.  

And can we please keep it?  

Insomnia, my unwanted BFF

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The other night I was so excited.  I was tired, achy, flary, all of the above and then some.  I was able to get in to see my favorite massage therapist for 50 minutes of amazing after work.  

I didn’t realize how badly I needed that massage until it was happening.

I left- feeling better and feeling sleepy- and rushed home to channel the sleepy into a good night of rest.  I got into bed around 8:45 (admittedly, very early for me but I was super exhausted) and I laid there looking at the ceiling, wide awake, until almost 2am.

There were relaxation techniques employed. There was yoga breathing. There was meditation. There was prayer.  And then I lost my zen like attitude and there was cussing, crying and wishing I had Harry Potter powers to knock myself out.  

Eventually I fell asleep but boy, was that night not fun.  

This is more of a call out for input because this is not a unique situation for me. My go to strategies for sleep issues are:

-I’ve created a ‘spa’ music channel on Pandora that I put on very low volume and focus on breathing/relaxation exercises

-I also have a white noise app in addition to a humidifier that sits about 4 feet from my bed that helps me drown out my thoughts.  Seriously, humidifier? Yes, I felt like an 80 year old because I was so excited when I bought it.  Who gets excited over buying such an appliance? This girl.

-I try to limit use of cellphone/laptop/tablet an hour before bedtime.  I am hit or miss at being successful here.

-Sleepytime tea! (I haven’t been compensated or even approached by the makers of this tea for mentioning this, disclaimer to make sure I’m being ethical .) Sometimes it works, sometimes it just wakes me up to have to pee. It does make initially falling asleep easier which for me is the biggest challenge.

-Heating pads- I own a variety and they do help me to relax

-Tiger Balm (again, not approached or paid to endorse, just mentioning for ethics reasons).  I don’t know if it’s the sensation or the smell that helps, but something with this calms me down.

But even with all of these tricks up my sleeve, I sometimes still struggle with sleep.  No, not sometimes.  Often.  I often struggle with sleep.  

What works for you?

Chronic Pain Disorders:Best Arthritis Blogs for 2016

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  I’m super stoked to be included on the list of Best Arthritis Blogs for 2016.  I’m even more stoked to be mentioned among many bloggers I’ve come to know as friends!  
How crazy is it to include bloggers among your friends? I will say that with those I’ve met in person, it’s a hilarious dance of I know you and you’ve read about many of my most personal feelings and experiences but we’ve never met and now here you are in person.  In other words, it’s awesome after you get over the initial weirdness.:) Same thing can be said about meeting people who read your blog.  I’m really more fun on my blog. 😉

Read more and find some awesome blogs that if you’re not reading, you should be at: http://www.chronicpaindisorders.com/the-best-arthritis-blogs-for-2016/

Many many thanks to ChronicPainDisorders.com!

Trying to listen when my body says ‘hey, hey you!’

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  NC is covered in snow right now which means that we had like 1.5 inches and completely shut down after we bought all the booze and junk food…I mean bread and milk…in the city and hunkered down for the snowpacolypse.  

I know.  I’m from here and I even know that’s bad.

I haven’t left my condo since Thursday evening.

I woke up this morning to sore wrists and just a tight body all over.  I tense when I flare, I think in large part due to the anxiety I have around flaring.  I also flare everytime the weather changes, and Mother Nature’s presence in NC lately has been bipolar at best.

I woke up, assessed how I felt and did the following: took a hot shower, did some stretching (yoga, foam roller and tennis ball for target points), and had breakfast.  I saw my car was completely iced over and went out to scrape it off so that I could drive if I needed to and to mitigate the situation in case we had additional snow.

Unfortunately, due to my flaring wrists and due to the fact that I lent out all my gloves for the Panthers game last week, I had to do with no gloves.  Which means I made 3 seperate attempts at scraping.  I’d do it until I was either too sore or too cold and go in for awhile.

God, I miss having a garage.  I feel like we should create some sort of legislation that allots for all RA patients to have a garage. I mean, politics are so stupid right now, it may actually get passed. (Yes, I went there…and won’t again…and still think I haven’t revealed my political beliefs on my blog.  My beliefs aren’t relevant here, but these days they sway toward who scares me the least. I don’t have a firm answer on that yet.)

Then I went inside and took an extra dose of Aleve, put my heated gloves on my hands,and reminisced on what it was like to not have to think about these things.

Growing up, pre spooniehood, I danced extensively.  In that phase of my life,injuries were almost revered.’She worked so hard,hurt herself, and still kept going!’  Having that said about you felt like a Medal of Honor, you were seen as legit in that world.

I remember warming up for a performance.  I had been trying for months to (on the ground) sit in a center split and put my stomach on the ground. I was so close.  So close, that as we were warming up, my coach came and helped me push down further.  

Unfortunately, when she did, she got momentum to push by digging her elbows into my inner thighs, extending my legs further back than they could go.  

I wound up having a severely pulled right leg muscle (hamstring) and was in pain/tears before I went on.  I took 4 Advil and did the performance.  I did every bit of it but during the last few minutes, I creepy smiled and cried at the same time because I was in agony.

If I figure out how to convert the VHS of that performance to upload here,  I will share. You can see that I’m smiling with tears running down my face. Awful!

It took me 3 months to get back to normal.  But it didn’t stop me from dance camp or other performances. I took no time to rest and recover.

Y’all.  That’s stupid.  Beyond stupid.  Dangerous.  The injury was bad enough that I still feel it 20 years later when I do lunges.

My point- because I do have one- living with RA teaches you true body awareness.  You don’t understand when you’re healthy what the ramifications are of not being aware and caring for your body.  Long and short term.  I seriously thought at the time ‘I took Aleve, I’ll be fine, I can’t let my group down. I can make it.’

My current self says to that: the group will live and adjust.  You do not have to make it if the only way you can is by smile/crying and Advil that really doesn’t do much for you.

I hate that only when I got this disease could I see the immediate and long term effects of not being aware of what my body needed.  I also hate that sometimes I feel like my own doctor/physical therapist/pharmacist to maintain. I know today what I needed to feel better and stay safe. I listened to my body and I responded appropriately.

 I wish my pre Spoonie self had taken better care of the body I still inhabit.  Didn’t take chances, gave it time to rest and recover.  It probably wouldn’t have made a difference in developing RA or not but at least I would’ve learned those skills in advance.

The first 2 years after diagnosis, I still had that push through mentality.  In those cases, it was almost an eff that to RA.  I’m not saying that the attitude isn’t important; my big thing for myself is to continue activities post diagnosis that I enjoyed pre.  But with any type of modification necessary to make it safe.

I’m thankful to RA for teaching me true body awareness; that it’s not an ‘I can make it’ mentality but an ‘I need this’ mentality.

In keeping with my self imposed theme of self-love this year, I’m trying to really listen to when my body tells me it needs something.  Ok, you need a break from scraping the car.  And another.  And another.  And now Aleve and rest.

That’s ok. Listening to what my body tells me will keep me healthy.