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Rheumatoid Arthritis

Addressing Fatigue and RA

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“Snap out of it.”

“You just need a good night’s sleep.”

“Maybe if you got out of bed, you’d feel better.”

If you have fatigue, chances are you’ve heard one of these or something similar. And if you suffer from fatigue, you know that they aren’t true at all.

Chronic fatigue is more than just being tired. It’s more than needing a cup of coffee or a quick power nap. Chronic fatigue can be debilitating and if you have Rheumatoid Arthritis, there’s a good chance that you deal with it on a regular basis. If you are fortunate enough to not suffer from chronic fatigue, a good way to understand how it feels is to think of the last time you had the flu or a serious illness. You probably remember resting, trying to watch a tv show or read a book and falling asleep a few minutes in. You awoke later to feel the same, still exhausted. The rest you had didn’t provide you with any energy at all.

Before I was diagnosed with Rheumatoid Arthritis a few years ago, I found myself falling asleep while getting my hair done. Sure, getting your hair done can be a bit boring, but definitely not enough to literally put you to sleep. I remember my initial reaction being one of fear. Not fear as to why I was falling asleep but fear that if I jerked awake while getting my hair cut, I could end up with quite a messy situation!

Fast forward a few years- my disease activity has gone up and down and much like the pain in my joints, my fatigue ebbs and flows as well. The difference is, I can medicate my pain- I can put an ice pack on it, take a pill, throw on a compression brace and I will ultimately (hopefully) get some relief. Fatigue on the other hand, isn’t that simple to overcome but here are some strategies that may help you:

Talk to your doctor.

  • This is important. Your doctor needs to know how much fatigue is impacting your life- just like your joint pain or stiffness.
  • Your doctor may also want to rule out any other medical causes for your fatigue so this should be your first to-do.
  • Be sure to explain how your fatigue is different from your feelings of being tired. When I first brought up my fatigue to my rheumatologist, she asked if I was getting enough sleep, if I possibly needed a sleep study. I had to really think about how to explain the difference I was feeling- it wasn’t something that would go away with a nap or 10 hours of sleep. It was a feeling of exhaustion from simply being awake.
  • Be sure to explain how the fatigue makes you feel. For me, it was scary. The fatigue would hit so strongly that I was afraid to drive at times. Make sure your doctor knows this.

Plan your day.

  • Fatigue is disruptive. It’s important to schedule a time to rest during the day. I know that when my daughter and I run errands on Saturday mornings, as much as I want to go to the gym in the afternoon and clean the house, I must lie down after lunch. I have to. Sometimes just knowing that my nap is coming, gives me that extra boost to get through the long Target line.

Communicate.

  • This is hard one, I know. People tend to understand and empathize with pain. If you’re in too much pain to do something, that’s ok, it’s not questioned. But if you say you’re too tired? That’s not always met with the same understanding.
  • Try your best to explain to your family, friends, and coworkers how your fatigue feels, how it impacts you and even how it impacts them. I had to have conversations with my husband like those I had with my doctor. I had to explain how dangerous the fatigue made me feel and how this wasn’t something I could nap away.
  • These conversations will vary with whom you’re speaking with. My kids see being tired as needing sleep and nothing else. Adults in my family have a bit more perspective since they can see my disease as a whole but they still have told me at times to drink a caffeinated drink or go to bed earlier.
  • It’s hard to concentrate or to be in a good mood if you’re struggling to stay awake. Explain that you are a better wife, son, employee, or friend when you get the rest that your body requires. Sometimes when people hear how something impacts them, they are more likely to address the problem.

Most importantly, try your best not to feel guilty (way easier said than done, right?!) and know that you are not alone. You didn’t choose this disease and I guarantee you would give it up in a heartbeat. There are plenty of other patients, just like you, battling with fatigue each day. Make sure you share your story and what has helped you in managing your fatigue. You can also visit Joint Decisions on Facebook to find more information and resources.

 

This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions, however, all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.

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Rheumatoid Arthritis

How to prepare for surgery

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A year ago I had my first knee surgery and I’ll be going back into the OR in a few weeks. Thinking back to my recovery last year, I realized there are things I can do now, to make life post-surgery a bit easier. 

Refill Prescriptions 

I typically refill my meds when I’m sorting my weekly pills and realize I need more for the following week. Now, I’m refilling early (when I can) and also plan to fill up two weekly pill cases. That way I can have my regular am and pm meds sorted and not have to deal with them right away. 

Doctor’s Appointments

If you have a chronic illness or two, you most likely have a lot of apppintments. There’s a good chance that one or more of them are set right after your surgery. If you wait and try to reschedule, you may be pushed way out, if your specialists are as busy as mine. Move your appointments now. For example, my rheumatologist follow-up is 3 weeks after surgery. I already know I can’t start my next biologic until 3 months post-op. It’s also going to be difficult to assess my disease activity when I’m on post surgery pain meds, crutches, and have limited mobility. Moving my appointment a little further out keeps me from wasting my time, my copay, and it’s one less ride I need from my family. 

Make Things Accessible

Since I hoard enough insulin pump supplies to be fully prepared for the diabetes apocalypse, I have to keep everything in under the bed boxes. It’s quite difficult to reach something under your bed when you’re in a full leg brace and can’t bend down. I’ve moved a couple weeks worth of supplies into a basket on a shelf that I can easily reach. 

Practice

Last year after surgery, they wheeled me out to my mom’s waiting car. I asked them to open the passenger door. I slid my butt in and went to bring my right leg in. Fail. My mom’s seat only goes back so far and I guess her car wasn’t meant for someone who is 5’8 to keep their leg straight. I needed up having to scoot backwards into the back seat. It is a miracle that I didn’t vomit all over that car. This year, I’m going to try getting into my own car’s passenger side, before I’m heavily medicated and woozy. 

Vacation Planning

Think of when you’re planning to go away. Make sure you have your plane tickets (FMLA papers, clearance for surgery from your PCP). You make sure your favorite clothes are clean and laid out for packing (or laid out to be easily grabbed when you need them). You have the things that make the trip easier- for me, it’s vitamin c drops, chapstick, my charger, and Propel water. 

I’d love to hear your suggestions for a smooth surgery recovery, please share! 

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Geek in the Pink

Important lines to draw between your advocacy life and personal life

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If you’re just beginning your advocacy journey or have been fighting the good fight for awhile now, it’s important that you take a minute to protect yourself. By protect, I mean to literally keep you and your family safe, to protect your personal information, but also to ensure you keep yourself balanced.

Facebook

There are two areas of Facebook for you to address- your personal page and your advocacy work- whether that is a page or a group you oversee.

  • Friends: consider this rule- you only accept friend requests from people you have met in person. I recently did a bit of purging and found myself trying to place how I even knew some of the people I was friends with. Remember, what you post can also be seen by friends of your friends (you can adjust the setting for this).
  • Advocacy Page: here anyone and everyone can like and follow along your advocacy journey; you can pick which posts you also want to share on your personal page, so you are still reaching your friends (who should hurry up and like your page of course!)

Instagram

This is a tricky one for me. I have a public account that shares all aspects of me. You can find my cat, what I had for dinner, and facts about my disease. But here is what you won’t find anymore:

  • Photos of my children: up until last week, you would find photos of my teens mixed in with my injections and favorite advocacy t-shirts. But not now. Why? A few reasons- my profile is public which means anyone and everyone can see what I share. As much as I would like to think that everyone in the world is wonderful and has good intentions, that’s not accurate. And more importantly, my children should have a choice in what goes up online about them.
  • Your data: make sure prescription and medical record numbers aren’t visible in your photos. Same goes for your address, phone numbers, and names of your physicians. 
  • Where I am at all times. Enter the #latergram. Again, privacy.

Email

If you’re like me, you check your email often…maybe a little too often. My inbox is full of school newsletters, potential product reviews, things I *need* from Amazon according to Amazon, new posts written about my diseases, events/conferences I should consider, and tons of health updates. All good things that prompt some type of action from me.

  • Split up your mailboxes. I have an email for my blog that was just sitting out in gmail land unused. Recently, I’ve started moving all of my “health” email content to that address. Why? Every email I read made me immediately think of what I could do with that information- do I share it on my Facebook page? Write a blog post about it? Tweet or Instagram it? Now when I’ve read my important emails (such as one about school closing early or a message from my doctor), I can go over to look at my advocacy updates. It’s a simple effort in self care for me as well.

Have you made any changes like this to your online presence? Please share what has worked for you and what I may have missed in the comments below!

 

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Family

I’m still a good mom

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It’s 12:30am and I just woke up to find my 13, almost 14, year old daughter sound asleep next to me. This rarely happens but when it does, it either means she couldn’t fall asleep or she’s had a really rough day. Whatever the reason may be, it means the world to me.

Waking up to see her ponytail on the pillow next to me means that just maybe I’m doing an ok job. Continue reading

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Rheumatoid Arthritis

Release the burden!

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Back in October, I had the pleasure of being with fellow RA patients in Philadelphia for our Joint Decisions Summit. On the last day, we had the chance to participate in the What I Be Project (you can read about my experience here).

After some discussion with the founder, Steve Rosenfield, I decided that I needed to be free of feeling like a burden. A financial, emotional, physical burden.

For the few months following the summit, I had a better perspective. Sure I would say that I was sorry to my husband too many times and yes, unnecessary tears were shed but I really tried value myself. Until this morning.

If you follow me on Instagram or twitter, you may know that I am almost always in some state of nausea. My pain patch makes me nauseous and when I take my morning or evening meds, my nausea spikes significantly (post methotrexate injection nausea is in a category of its own). I drink ginger ale every morning on my commute- I have my nausea attack down to a science. I have Zofran but I try to save it for when I’m traveling or really need to function after methotrexate.

Continue reading

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Favorite Things

The Whole Health Life Review

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The Whole Health Life is, to put it simply, a book that discusses how our mind and body are so tightly connected and how that connection impacts our lives, especially the lives of those with a chronic illness.

Before I tell you what the book is about, let me tell you what it isn’t. The Whole Health Life is not:

  • a quick fix or a cure for your disease or a guarantee that you won’t get a disease in your lifetime
  • an alternative to every medication your doctor has prescribed for you
  • full of expensive supplements and treatments

What it is, is a comprehensive guide of simple, evidence-based solutions to improve your health from all angles. Continue reading

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Hope Rheumatoid Arthritis

A much needed dose of hope

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Today I *finally* saw my new rheumatologist (in case you missed it, my previous doctor retired in November, coincidentally when one of my worst flares decided to start). I had such high expectations for her. The funny thing is, they weren’t concrete expectations- like a good listener, researched focused, etc. I was just looking forward to seeing someone who understood my disease and could maybe help me. That simple.

She started the visit about 30 minutes late. Continue reading

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Favorite Things

PillDrill is a must for patients!

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“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” 

 

When I was offered the chance to have a PillDrill system sent to me to review, I had high hopes. Like many of you with a chronic illness or two, I take a lot of medications. Some are morning only, some have to be taken at night, and others are taken weekly or throughout the day as needed. I found myself jotting pain medications or antibiotics on post-it notes around the house. I tried to remember the last time I took a pain med by seeing if I happened to tweet about my pain earlier. There were days I’d start feeling strange at work and didn’t realize until I got home that night, that I hadn’t taken my morning medications.

In short, my system wasn’t working. All of that time and energy I spent trying to remember my prescriptions and jot down how I was feeling that day (to share at future doctor’s appointments) could have been spent on much better things.

Enter the PillDrill.

Continue reading

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Hope Rheumatoid Arthritis

Don’t make decisions for tomorrow based on today. 

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Today was one of the worst days I’ve had in my five year battle with Rheumatoid Arthritis. I woke up hurting but taped myself together and took three tabs of ibuprofen as I dropped my son off at school.

As soon as I got on the road to start my 50 minute commute, my elbows (freshly taped this morning) were so painful and felt so weak that I had to switch back and forth between each arm to hold the steering wheel. My hands started swelling and my knuckles wouldn’t crack, no matter how hard I tried. I grabbed my heavy compression gloves and put them on at a red light.

My knee decided to join the party a few minutes later. Since I was driving, there wasn’t much I could do except massage it (and punch it) with the tennis balls I keep in my center console.

By the time I arrived to work, my eyes were red from crying and I was exhausted.  Continue reading

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Rheumatoid Arthritis

The Gupta Programme

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in now way influenced by the company.

The Gupta Programme is a three month program that includes a variety of materials. The program is designed for patients with ME/CFS, Fibromyalgia, and/or MCS. I can attest to how it helps with Fibromyalgia and with the pain and stress my other chronic illnesses cause me.

Overall, I found the program to be all encompassing- it allows learners of all types to get the most out of this program. The program includes the following: Continue reading

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