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Favorite Things Rheumatoid Arthritis

MedNexus Review

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**This is a sponsored post- opinions expressed are based on my own personal experience**

If you’re like me, you may have found your first visit to a physician, especially a rheumatologist, a little overwhelming. I left my first visit with pamphlets/brochures about RA and medication options. My doctor told me that he knew I would go home and immediately go to google.com..he asked me not to but said to please share with him anything I had looked up so he could weigh in.

I won’t tell you what comes up when you google a disease. You’ve probably done it. And if you haven’t, I’d be willing to bet that you have looked up your health symptoms before. Sore throat, fatigue? Must be cancer, right? No! It’s hard to find quality information and to not have to spend time wading through articles and sites that have nothing to do with what you initially searched for.

This is where MedNexus comes in. MedNexus is a medical search engine that promises to provide greater accuracy and clarity. Their engine selects the most clinically-relevant and useful content for you.


One of my favorite things is the MedNexus homepage. Simple and easy to navigate. I don’t have to waste time looking for where to begin my search. I wanted to search “Rheumatoid Arthritis”.

When you initially start typing in your search criteria, the site starts listing questions that are relevant to your disease. Similar to Google’s autocomplete function, this can help you answer questions you hadn’t even thought of yet.

Upon searching for RA, the following questions started to come up:

  • What is Rheumatoid Arthritis?
  • How do you diagnose Rheumatoid Arthritis?
  • How do you treat Rheumatoid Arthritis?
  • What are lifestyle tips for Rheumatoid Arthritis?
  • and many more..

If you ignore the suggested questions and just search, your results come up. Search results are broken down into the following categories:

  • Health Topics- general information from trusted sites
    • Joint Deformities in Rheumatoid Arthritis (Arthritis Foundation)
    • Rheumatoid Arthritis Remission, Rheumatoid Arthritis Pain, Rheumatoid Arthritis Complications (Rheumatoid Patient Foundation
  • Published Research- links for publications written by physicians
    • HIV/AIDS and Rheumatoid Arthritis (Autoimmunity Reviews)
    • STAT4 and the risk of Rheumatoid Arthritis and Systemic Lupus Erythematosus (New England Journal of Medicine)
    • Biological Drugs and Risk of Infection (The Lancet)
  • Forum Discussions- health websites with forums- user opinions
    • Insurance Quotes for RA Sufferers, Painful Feet Advice, Diagnosis Delays (Arthritis Care)

Prior to viewing your search results, one of my favorite features appears:


Overall, I find MedNexus to be a wonderful site. I like that search results come from reliable sources and can be filtered into categories that make sense. I hope that you’ll visit MedNexus and please keep in mind that the site hasn’t been up for very long, so they are constantly adding additional medical conditions.

If you’d like to give MedNexus your feedback, please click here to take a short survey.

Rheumatoid Arthritis

Opiates give me time

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Yesterday, the Centers for Disease Control and Prevention released these guidelines in regards to prescription painkillers. The guidelines encourage physicians to only prescribe opiates to cancer patients, those that are terminally ill, or those in acute pain.

As a patient living with Chronic Pain from Rheumatoid Arthritis, I’m disappointed. The guidelines are intended to reduce addiction and death rates related to opioid use. I understand the risk of addiction and death but as a patient, what are the proposed solutions for me?

Here are the CDC’s Guidelines for Patients:

img_2661.jpgI’ll use myself as an example to address the options above:

  • I have seropositive Rheumatoid Arthritis- in short, there is no doubt about my diagnosis.
  • Imaging tests- multiple x-rays and MRIs show permanent damage to my elbows, knees, hands, and feet.
  • I honestly have not tried Cognitive behavioral therapy- I am open to it but would need to find someone who accepts my insurance.
  • Acetaminophen on its own doesn’t touch my pain, moderate doses of ibuprofen do help with pain during the day.
    • As a side note- I was taking 600-800mg of ibuprofen 3 times a day with pretty good results during the day but needing some extra relief in the evening (not to mention the burning in my stomach…)
      • I also have Type 1 Diabetes and finally asked my pain management doctor and endocrinologist if ibuprofen was an appropriate long term solution for me. Their answer? No. Why? Kidney disease. Ibuprofen puts additional stress on my kidneys. I still use it occasionally but not regularly.
  • I have gone to physical therapy multiple times- I’m currently going to work on my knee and hip pain. I exercise 6 days a week at the gym. I average 11,000 steps taken a day.
  • I take Cymbalta which helps with my anxiety and helps decrease my overall fibromyalgia pain.
  • I have had multiple steroid injections in my elbow, foot, and knee. As recent as last month.

I doubt anyone working on these guidelines for the CDC knows what it’s like to be up all night crying in pain. What it’s like to experience such intense pain that it makes you vomit. And then to try to go to work the next morning and care for your family, after being up all night in pain with no relief.

Here is what opiate medications help me do:

  • Be a present wife and mother. I’m not in bed all day. I’m not crying all night. I’m at my son’s basketball games and shopping with my daughter.
  • Work full-time. Sure I have to make accommodations for my illness, opioids don’t make everything perfect.
  • Keep my blood sugars in control. My blood sugar is, unfortunately, affected by much more than food. Pain and stress cause it to rise dramatically, so much so that my basal rates overnight are higher for when my pain is typically at its worst.
  • And most importantly- opiates let me have a good chunk of my life back. Time that would be spent suffering in pain. Time that is priceless to me.

How do opiates help you?

Rheumatoid Arthritis Type 1 Diabetes

Tidepool Love

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Last Saturday I had the privilege of going to my local JDRF TypeOneNation Research Summit. I learned valuable information and got some reminders I really needed (like bolus 15 minutes before eating, duh). Aside from wanting to share everything I had learned and ask everyone I knew to donate to JDRF, I walked away with an important action item for myself. Get set up with Tidepool. And that I did.

Quick background- I have a Minimed 530G with Enlite system. I also have the Minimed Connect which you can learn about here. I upload to Carelink via the Connect and I pretty much just glance at my screen, look over the past few hours, and try to make decisions on my diabetes. Sounds like a great plan, right? Uh, no.

Everything affects Type 1 Diabetes- food, stress, sleep, activity, hormones, etc. I’m fortunate enough to have Rheumatoid Arthritis to complicate things even further. My pain increases my blood sugar so much that I have a higher basal rate in the evening, for when my pain is at its highest.

Wouldn’t it be great to view my Continuous Glucose Monitor data and make little virtual notes on it, throughout the day to reference my pain, what I ate, when I exercised, when I felt stressed, etc.? Maybe it would look like this?

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So cool, right? It’s Tidepool’s software (with the best name ever) Blip and it’s corresponding app, Blip Notes. Setting up Tidepool is a breeze- they are one of those wonderful sites where your username and password work for everything- no need to create 5 different combos for one site. You download the uploader (haha) and off you go! Don’t worry if you don’t have Minimed products like me, it works for most of those other companies too.

Even without the Blip notes, the data is impressive and informative. It shows things like how many fingersticks you’ve done (I need to work on that too…), boluses entered, basal tweaking you’ve done, etc.

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For me, Blip notes is the icing on the cake. Free and easy to use. You create a new note, select one of your frequently used hashtags (at the top) or create a new one, add your note and done! Super easy, very quick..time and date are automatically added (you can change if needed).
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I’d love to hear your thoughts on Tidepool- have you tried it? If so, what’s your favorite thing about it?

2,016 Miles in 2016 Rheumatoid Arthritis

Motion is Lotion!

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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!

 

Rheumatoid Arthritis

Be Gentle

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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.

Favorite Things Rheumatoid Arthritis Type 1 Diabetes

Giveaway time!

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If you read my Favorite Things Part One post, you already know that I love my NatraCure Arthritis Booties. NatraCure 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!

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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

Rheumatoid Arthritis

Unwelcome Glimpse into the Future

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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.

Favorite Things Rheumatoid Arthritis

Ahhh Relief!

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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!

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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.

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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!

 

2,016 Miles in 2016 Rheumatoid Arthritis

Fighting RA with Miles & Dollars

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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)

 

Rheumatoid Arthritis

Terrifyingly Excited

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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?