Category Archives: Rheumatoid Arthritis

2,016 Miles in 2016 Rheumatoid Arthritis

Motion is Lotion!

Published by:

By now I’m sure you’ve seen my daily Fitbit stats postings on Instagram, Twitter, and/or Facebook. They look a little something like this one from 2/29:

Every time I share these numbers, someone asks how I manage to move while in so much pain from Rheumatoid Arthritis. Aren’t I afraid I’ll be in more pain? Aren’t I tired? I made a commitment to myself this year to move for 2,016 miles in 2,016. Seems crazy, right? (See this post for an explanation). Do I go to the gym for hours? No!

First step- I don’t leave the house in the morning under 1,000 steps. I march in place while I brush my teeth, dry my hair, etc. It’s important for me to move because my commute to work is at least 45 minutes. Sitting still for that long makes my joints angry so it’s helpful to get some movement in first thing.

Next- I have step goals throughout the day.


This is on a cabinet on my office. Confession, I rarely leave work at 7,500. More like 6,500. I have a pretty sedentary job so I make sure I move all day. I asked for a headset for my office phone so I can pace around on long calls. I jog in my office for a few minutes each hour.
Simply moving your joints around throughout the day is so important. It truly reduces stiffness.

How do you keep yourself moving throughout the day? I’d love some tips!

 

Share
Rheumatoid Arthritis

Be Gentle

Published by:

I’ve been having horrible knee pain for the past few months and saw a new orthopedist last week for a consultation after my rheumatologist had ordered an MRI. After examining me, my doctor noticed pain in my hip and limited movement so he ordered another MRI. Today I went back for those results.

The good news- no tears as originally suspected. No immediate reason to look at anything from a surgical standpoint. The not so good news- I have multiple erosions on my hip.

I know I have moderate-severe Rheumatoid Arthritis. That’s not news to me. I was diagnosed almost exactly 4 years ago and although I briefly had what I consider remission to be (9 months), I haven’t gotten much of a break since. Finding out that my hip isn’t looking so great, felt like a slap to the face. It felt like all of my hard work- all of the pain, the fatigue, the injections, the nausea, the pills…everything, meant nothing.

I pride myself on being positive. I shrug off worry from others. But it’s hard to fight this fight every day. It’s hard to go to battle for a fight you’ll never win. Never. Remission? I don’t think it’s possible for me anymore. And the thing is, if for some reason my disease activity disappears, my permanent damage that causes daily pain, won’t. That isn’t going anywhere. I can honestly say that I will never experience a day without pain, without the help of controlled prescription medications. That’s a heavy thought for me.

So after mentally beating myself up all night..after unsuccessfully trying to psych myself up and say “it’s going to be ok”. I came across this quote on Instagram. It was exactly what I needed to hear.

It’s ok to be scared and tired and angry. It’s ok to cry. I know I’m doing the best I can and for tonight, that has to be enough.

Share
Favorite Things Rheumatoid Arthritis Type 1 Diabetes

Giveaway time!

Published by:

If you read my Favorite Things Part One post, you already know that I love my NatraCure Arthritis Booties.┬áNatraCure is a wonderful company and they’ve generously donated a pair of booties for me to give away! The contest starts tomorrow, February 18th at 12am. Good luck!

onfeet-hot_1

 

Guaranteed to deliver relief in minutes, NatraCure Arthritis Booties combine traditional heat therapy with cutting-edge SmartGel┬« Technology for the proven solution you’ve been looking for.

 
a Rafflecopter giveaway

Share
Rheumatoid Arthritis

Unwelcome Glimpse into the Future

Published by:

Last week, I fell down the stairs, right on my ass (I’m fine). It hurt like hell to do anything- sit, stand, lay down..not fun. As if falling wasn’t terrifying enough, my recovery gave me a glimpse of what my future with Rheumatoid Arthritis might hold, and that was awful.

I fell on a Friday night. Saturdays are when I typically go to the grocery store, Target, do laundry, clean up the house, etc..but this time I was in tremendous pain and really uncomfortable. My husband made me promise that I wouldn’t go anywhere without him, so he could help me. In theory, I love help. In reality, I hate it. Why? I hate not being independent. It drives me insane. Just leaving my car at the dealership for an afternoon and having to feel “stranded” at home really bothers me.

Up until my fall, my life with Rheumatoid Arthritis was as predictable as it could be. Even though my pain can be horrible, I know how horrible it will get. I know that although I will need a nap, I can go to Target by myself. My fall opened my eyes to what my life with RA could be in a few years or even a few days. The pain was relentless..my huge ice packs, prescription pain meds, and compression gear weren’t giving me even the tiniest bit of relief like they usually do. I needed help to do everything including reaching my water bottle on the coffee table a few feet away.

This terrifies me because I know how quickly my quality of life can change. Five years ago, I didn’t have Rheumatoid Arthritis. I could run, I could do a push-up, I could go out late at night with friends. Four years ago, I couldn’t walk down the stairs or bend my elbow. And now, I can’t survive without strong pain meds, lidocaine patches, a brace on my knee, and doctors appointments almost every week. In a year, I could be asking for help reaching my water and not being able to do anything on my own.

So, what do I know? I know that I’m going to keep fighting. I’m going to keep pushing through each day, one day at a time.

Share
Favorite Things Rheumatoid Arthritis

Ahhh Relief!

Published by:

I think I have a fairy godmother that goes by the name NatraCure. After expressing my frustration with my nagging shoulder and being unable to find something that could help, they sent me a Twitter message saying they were sending a product that might be able to help me. Although they sent me the following product to review, the opinions shared here are 100% mine. NatraCure is the first to admit that the following product has gotten mixed reviews, so they weren’t even sure if it would help me.

Enter my magical magnet shoulder brace!

image1

So to be honest, I was a little intimidated looking at it. I didn’t know how it would fit and once I took it out of the package, my first concern was how I would put it on by myself.

image2

It actually was easy for me to put on, even with my bum elbow. Now I have to admit, if you are small chested (ladies…) or very thin/tiny, I can imagine this might not fit well enough to help you. I’m 5’8 and it fit me on almost the tightest velcro placement.

So I put it on, threw a sweatshirt over top and hoped for the best as I went downstairs to make dinner. Usually the reaching, chopping, stirring, etc. involved in cooking dinner doesn’t please my shoulder. But I noticed, it didn’t hurt! It didn’t ache to the point that I had to take a break or constantly switch arms to get things done. My shoulder instantly warmed up and felt wonderful. The brace was so comfortable, I didn’t notice I had it on and my daughter commented that she couldn’t tell through my sweatshirt that I was wearing it.

So a couple of notes- my shoulder flares from Rheumatoid Arthritis, I have not actually injured it and although I have pain, I don’t have limited mobility with it. Just keep this in mind if you’re looking for a shoulder brace for other reasons.

Give me and NatraCure a shout if you’ve tried this brace and let us know what you think!

 

Share
2,016 Miles in 2016 Rheumatoid Arthritis

Fighting RA with Miles & Dollars

Published by:

As if challenging myself to walk 2,016 miles in 2016 wasn’t enough, I’ve also decided to take on raising $2,016 this year for the National Arthritis Research Foundation!

This has been a bumpy week- if you read my last post, I’m moving off Enbrel and back on to Humira. I had labs and an MRI done on Friday. MRI shows some issues in my knee so this week I will be trying to find a new orthopedist who is a fantastic surgeon. Fingers crossed (can’t really do that with today’s swollen man hands, but you know what I mean!).

Here are my updated stats. If you can, please consider donating to my cause. Whether it’s $20.16, $20, $16, a penny a mile, or a shout out on Twitter, every bit of encouragement helps me keep pushing myself to meet my goals.

2,016 miles in 2016!(6)

 

Share
Rheumatoid Arthritis

Terrifyingly Excited

Published by:

32dc85aa47688e0bc28b3eed34543301f9

The ecard above perfectly sums up how I feel right now.

Today I had my regular follow-up with my rheumatologist. I had a lot of concerns and questions, so I made sure I wrote everything down in my planner- unlike a post it note or scrap of paper, my planner is always with me.

Before I even had a chance to pull my planner out, my doctor looked at the giant knee brace I had on and asked what was going on. I told her that I followed up with ortho regarding the extreme knee pain I kept having. I had an xray, did physical therapy, and now can only find temporary relief when I wear my giant hinge brace. My ortho doctor had said the four words I hate the most “it’s just your RA”. Thankfully my rheumatologist never blames things on my disease without ruling other things out. It’s something I really like about her. She immediately wrote an order for an MRI of my knee.

And then came the questions. How are things? How is work? How is home? I was honest. I wasn’t happy and I was concerned that I was heading down the road we already went down with Orencia. Orencia did absolutely nothing for me and we tried it for longer than we should have (9 months). I have additional permanent damage from this time. In hindsight, we should have been more aggressive but being aggressive is what made me so sick for months with an infection I couldn’t fight. Orencia was safe.

My doctor asked if I was ready to give Humira another try. I didn’t expect her to say that and it took me a second to respond. Humira. When I was diagnosed with Rheumatoid Arthritis in January of 2012, I spent six months on methotrexate only before my previous doctor added Humira injections. For the following 9 months I was in what I imagine remission to be. I felt fantastic. I had energy, no pain, I could straighten my elbow for the first time in years. It was great.

Then in the spring of 2013, I got sick. It started as a sinus infection with a cough and then a fever came on that was continuous for the next 6 months. I would go on to see hematology/oncology, infectious disease, have vials and vials of labs done, pulmonary function tests, echo cardiogram, etc. It took multiple antibiotics for the infection to finally die. I wouldn’t go on another biologic until the fall of 2014, when I tried Orencia.

So why try Humira? Why risk another infection? First of all, a few months ago I had sinus surgery. Enbrel is in the same class of drugs as Humira..and both have sinus infections listed as one of their common side effects. I had sinus infections continuously while I was on Enbrel up until after my surgery. Since my surgery, I have had no sinus issues. The thinking with Humira is that I got a sinus infection which my body couldn’t fight off. Now that my sinuses are clear, I’m hopeful that Humira can give me the relief I’m so desperately searching for. And in the end, what do I have to lose?

Share
2,016 Miles in 2016 Rheumatoid Arthritis Type 1 Diabetes

Triple Digits

Published by:

2,016 miles in 2016!(3)

I’ve reached triple digits in my 2,016 miles in 2016 challenge! This week was especially hard. With a nasty blizzard on it’s way, my joints were angry all week in anticipation. I rejoined the gym and was able to use my favorite machine, the Arc Trainer, which is much more gentle on my joints than walking or doing other cardio exercises. If you have Rheumatoid Arthritis or any joint issues, I highly recommend giving it a try.

The other hurdle I’m trying to deal with is my blood sugars plummeting while I exercise. My endo gave me a lot of suggestions on when to start temp basals on my pump, what to eat, etc. but this week was still bumpy. Even after eating a banana and a peanut butter sandwich before exercising, having my insulin completely suspended, I will still drop dramatically during exercise. I hate the idea of having to eat because of exercise, very frustrating. This week I’m going to try drinking Gatorade while I exercise- low cal but has some sugar so hopefully it will keep me in check. If you have Type 1, like me, how do you deal with lows while exercising?

In order to meet my weekly mile goal, I made sure I went to the gym every day, Sunday through Friday, including Thursday night and back Friday morning before the storm. I gave myself a much needed break on Saturday (doubt I made it over a mile). Today my joints are still pretty painful plus I have the added bonus of a methotrexate hangover but I’m hoping to meet my step goal by moving around my house. We’ll see!

 

Share
2,016 Miles in 2016 Rheumatoid Arthritis Type 1 Diabetes

Still moving..

Published by:

2,016 miles in 2016!(1)

It hasn’t been easy but I’ve kept up with my goal of walking/running/crawling/dancing my way to 2016 miles in 2016. There are days that I don’t want to move at all and days that despite telling myself the opposite, I don’t feel better after reaching my goal of 5.5 miles a day…I actually feel worse.

But I’ve kept on. Why? How?

  • I’ve made my goals public. Very public. I talk about them at work, at home. I post on Instagram, Twitter, and Facebook.
  • I’ve broken down my goal into smaller daily/weekly goals.
    • 5.5 miles a day or 38.8 a week doesn’t seem as insane as 2,016 miles
  • I have even smaller goals for steps during the day at work
    • 2,000 by 10am; 3,500 by 12pm, etc.
    • I try to get up and move around every 30 minutes, even if it’s just marching in place

I’d be remiss if I didn’t mention my Fitbit. From weekly or weekend challenges with friends to just seeing my steps and miles go into the “green”, my Fitbit One is a tremendous motivator and makes keeping myself accountable super easy.

How are your resolutions or goals going? What helps you to stay on track?

Share
2,016 Miles in 2016 Rheumatoid Arthritis Type 1 Diabetes

Resolution to move!

Published by:

2,016 miles in 2016!

This year I’ve committed to walking/running/crawling/dancing my way to 2,016 miles in 2016! This resolution was an easy one for me to commit to in theory. Getting my steps in each day makes my blood sugars better, makes them more consistent. Walking makes my joints feel better (my knees haven’t gotten this memo yet but they’re working on it) and will strengthen the muscles around my joints, providing them with better support.

So how does 2,016 miles translate to daily goals? I need to get between 5.5 and 6 miles in each day. This is about 12,000 steps or so depending on the activity I do. On days I’ve been feeling strong, I’ve tried to get a little more than 6 miles to cover the days where my joints are angry and having nothing to do with any resolution I’ve made.

Every Sunday I plan on updating this graphic to keep myself accountable. I track with my Fitbit and they calculate my weekly miles to make it easy for me.

What resolution(s) have you made? Are you still going strong on Day 10?

Share