Category Archives: Uncategorized

Happy 2017!

Standard


Happiest of New Years to all of you!  I, for one,  am excited for the chance to wipe the slate clean.  To make better decisions for my health and to realign where I decide to spend my time with what’s important to me.  To find happiness in learning and simpler things.  To spend more time with those I love most. 

Best wishes for all of the things you want for yourself for the new year.

Merry Christmas and Happy 2017!

Standard

So my last post was in July.  Eek.  Worst. Blogger. Ever.

It was unintentional.  I’ve had plenty of material to share.  

  • Tried cryotherapy.  It was cold.  Like really cold.  And I realized I still get panicky in enclosed spaces.  Particularly if they are freezing and I am in my underwear.  It did help, but I’ve got to work on that whole naked and claustrophobic thing.
  • Finally allowed my doctor to put me on anxiety medicine.  I’ve struggled with anxiety and when I’m really stressed, panic attacks, since high school.  I’m feeling much more human, have been able to develop some ‘calming’ techniques that are working in situations that usually bug me out, and am shockingly actually sleeping for the first time in years.  I guess it makes sense that you sleep more soundly when you aren’t so tightly wound.
  • Bought a bicycle.  I state bicycle because I live in the South and when I said bike to someone, they assumed a Harley.  Nope.  I’m accident prone on a good day.  That would be a terrible idea.  But so far, I haven’t fallen off the bike. Yet.
  • In line with hurting myself in strange ways, I wound up on ten days of antibiotics because my fur child accidentally bit me while we were playing.  I realized as it was happening that in the 14 years I’ve had her, she’s never once bit me.  Nipped, sure.  But a true bite feels *surprisingly different* than a playful nip.  By surprisingly different, I mean that my whole hand swelled up and I spent 3 hours at urgent care.  On the left is 3 days after, the right is the night of.  Public service announcement: I googled how to treat a cat bite a few hours later and learned that if not treated quickly, one could end up hospitalized on IV antibiotics.  I’m so glad I learned that a few hours after the bite because I fear what the implications could be for immunosuppressed people.  I’d like to retain my hand and not have to explain why I have a hook!  I’m fine now.

So clearly, I’ve had a ton going on.  The new job is great too and keeps me hopping.

So why the silence?  

I’ve been doing a lot of thinking lately and for a great part of 2016, my priorities have been completely out of whack.  I’ve been eating horribly…as in eating ALL THE FOOD.  And drinking too much…2 glasses of wine a night.  Which isn’t bad bad but still more than I should.  I’ve stopped exercising.  All those together mean I’ve gained weight and feel like I’ve let myself and my health done.  

My focus has been work and social.  Period.  Not gonna lie and say that I’m too busy to blog or to make better wellness decisions.  It just hasn’t been a priority.

I miss feeling good about the decisions I make for my body.  I miss feeling physically strong.  Yes, you can have RA and still feel strong.  Even on a bad day, pushing myself to take a few extra steps can feel like an accomplishment and I just haven’t pushed myself to do that.  I miss blogging.  I enjoy the cartharsis it brings.  I like connecting with other patients.  I miss not being 100% in the loop on what’s going on in the community.

My project for 2017 is balance.  Balance in all things.  I want to write again, to connect again, to be the best version of me with RA that I can be.  I hope I never have to reset my password to log into my blog ever again.  

Happy 2017 to all of you!  

I’m too sexy for my…night guard

Standard

Back in the fall, I became a bit concerned (read: obsessed) about RA and gum/teeth issues.  

It’s a real thing.  A good starting  point for research is here.

I scheduled a dentist appointment because 1) I needed a cleaning and 2) after several days of sore, puffy gums, I finally got the flashlight and looked at them in the mirror.  

My reaction: oh the horror!  My left gum on the side had noticeable recession.  It scared me and I diagnosed myself with gum cancer.  And then convinced myself that all my teeth were going to fall out and I’d turn into my great grandma who used to take her dentures out and wave them around at us when we were little and didn’t want to drink milk. (Granny was awesomely twisted.)

Because, you know, rational.  

Then I turned to the Google machine, read about the whole RA/gum health thing and calmed down.  Well, calmed down some.

My dentist took a good long look and let me know that no, it is not an RA/gum thing.  It is a clinching and grinding my teeth at night thing.  But that gum health is super important in RA patients and we need to get the grinding/clinching under control.

I finally got my night guard last week.  I know, you read correctly that I’ve known I needed it since the fall.  I plead…busy. 

I went in a few weeks ago and the custom tray was done last Friday.


I mean, so SEXY, right?

Yikes.

But I do like it for 2 reasons: it should curb the grinding and clinching and it should also force my jaw into a ‘joint neutral’ position when I sleep.  I don’t have jaw involvement so anything I can do to promote jaw health seems critical.

So I’ve been wearing it at night for a week.  

My takeaways:

– I’m a choking hazard hypochondriac.  It fits snugly on my teeth so there’s no way (hopefully) I could choke on it.

-I couldn’t sleep the first night in it because I was so aware of it.  I wore it a few hours and then took it out.

– I’ve been sleeping better the past few nights with it BUT all my dreams have had me chewing gum.  When I wake up, I’m voraciously chewing on the guard. Like a dog on a bone!  Pretty sure I never clinched or ground my teeth that hard.

-Last night, I apparently pulled it out at some point and it took me a few minutes to find it in my bedding. I put it back in and went back to sleep only to dream about destroying it.  My reaction in my dream to the destruction was not ‘oh no it broke.’ My reaction was ‘hell yeah that thing is gone.’

– I understand why my parents got so pissed seeing a retainer on the bathroom counter growing up.  I paid $200 after insurance so I’ve got to get used to it to see if it works.

I’m sure I’ll get used to it and stop dreaming about its demise. I’m hoping to see no additional gum recession at my next appointment.

Tell me about your experiences with gum recession, night guards- tips? Success stories? 

100 Miles in May…and then life happensĀ 

Standard

A lot has happened to me since I naively stated online that I intended to walk 100 recreational miles in May with friends.  

The universe has a great sense of humor.

I will admit, I did know the night that I posted that blog that I would be receiving a job offer in short order.  The furious walking of the days before and after that offer helped me clear my mind and take a leap of faith.  

It wound up being a very swift leap of faith.

You see, I wasn’t even looking for a new job.  It found me and I was part so excited and part broken hearted- it was a GREAT opportunity but the job I had felt like family.

So I walked and walked and walked some more.  I talked to friends and mentors.  And I made the hard decision to leave the company that felt like family and take a big jump professionally.

I started on Monday ie yesterday.  I drove down to Atlanta for training on Sunday and have spent the past two days on training.  I’ll be home tomorrow.

But…no walking yet this week.

However, last week as I was closing out my time with my old job, I was anxious, panicky, and scared.  Not flaring but feeling almost how you feel when you know one is coming on.

I had an appointment with my rheumatologist on Thursday which settled me greatly.  We discussed the change and she actually thinks my joints look better.

Something else I learned? When you have choices between insurance plans, ask your doctor for advice.

I had a high deductible and low deductible choice and when she said go high deductible, I looked at her like she was crazy.

She told me to call the insurance company to find out the contracted price for xeljanz and then verify how much money o have left on my copay card.

Apparently, at this point in time, insurance companies don’t track what’s paid by copay assistance plans.

So I have 11k left on my copay card. A one month supply of xeljanz is roughly $3,500. The copay card will cover it.  And my $2,600 deductible will be hit in month 1 of coverage.  No more appointment copays or prescription copays….until April 1, 2017.

Note: I am not an insurance agent- my doctor mentioned this to me with the instruction to call insurance and copay program to verify in addition to reading my plan.

She was right-this will save me a ton of money.

Anyways, back to my point which is that once I was on the road to Atlanta for training, I felt peaceful.  A feeling that walking everywhere couldn’t get me this last week.  And a feeling that lets me know this is the right leap.

Back to walking daily this weekend!

100 Miles in May: May 1st

Standard

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

Standard

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

Standard

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