at the Water's Edge

Living life and learning all I can along the way!

RA Blog Week - Day 1

Rick Phillips of RADiabetes has put out the challenge to participate in "RA Blog Week" this week. While I'm not sure I can commit to writing a post per day, I figured I should at least get something published! More about RA Blog Week and the list of prompts can be found here. I have a few posts that I will be recycling, like today, Day 1.

Here's the day's prompt: "A day (or an hour) in your life – Pick a day, an hour or half a day and tell us what happens? Are you stiff when you get up in the morning? Tell us about getting ready to go somewhere, or going to a restaurant. Pick any unit of time and tell us what your life consists of."

Because my health has been pretty stable for a while now, there's not a whole lot new to write on what my life is like other than what I've written previously. So, we'll go into flashback mode!

A Day in the Life Of...

I recently had somebody tell me that I should do a blog post about what it means day-to-day to live with rheumatoid disease.  And, I immediately thought: that’s a good idea!  Rheumatoid Arthritis (RA) or Rheumatoid Disease is a chronic autoimmune disease whereby the body’s own immune system attacks healthy tissues.  This leads to joint pain, stiffness and swelling; it can affect the organs, such as the heart; and it often causes fatigue and low-grade fevers.  I was diagnosed with RA when I was 19 and was fortunate that my doctors caught it early and immediately started me on aggressive treatments.  I am also fortunate that I respond very well to the treatments that I’ve tried so far, meaning that RA has impacted my daily living far less than it could have.  I know that other patients who live with more pain or who don’t respond to treatments will have a more dramatic story to tell, but RA has still changed things for me.

RA affects my life in both physical and emotional ways, and also affects me on the short term and the long term.  Physically, my ability or inability to perform various routine tasks can change day to day, as RA often presents itself in a series of flares (active and more intense symptoms) and remissions (periods of low or no symptoms).  That’s part of the fun of RA: you never know how you’re going to feel when you wake up.  For me, the areas of my body that have been most affected are my hands, wrists, feet and occasionally knees.  

On mild days, it may mean nothing more than that I feel little stiff and sore – I often compare this to the feeling you get in your muscles after a hard workout – only, this is in my joints.  On worse days, it begins to impair my ability to perform daily tasks.  When RA is active in my hands, I often have swollen and/or painful fingers.  This leads to things like getting rings stuck on, not being able to make a fist or hold a firm grip on smaller objects, and cringing with pain when somebody gives me a firm handshake.  

When my feet and knees are bad, I will have a hard time being up and walking around too much – and will have a very hard time standing still (say, in line) for long at all.  The knees especially make this difficult, because it’s more than just pain – it’s the feeling that your knees may give out at any moment and not be able to support your weight.   Even if I’m not currently experiencing a flare in my feet or knees I have to think twice about doing physical activities that are strenuous – activities that I love – such as skiing and hiking or backpacking.  In my current state of health, I can usually do these activities, but not without repercussions in the form of days of pain afterwards—the kind that makes it hard to walk and wakes you up at night.  I finally learned that I need to listen to my body and take some extra measures to keep my symptoms in check when I do want to do these sorts of activities.  I at least wisened up enough to request a prednisone burst from my doctor before heading to Isle Royale!

This year, my main problem area has been my wrists.  My doctor said that from my x-rays the space between my wrist joints is narrowing and he’s concerned that the bones may begin to fuse, which would permanently limit my mobility.  Since December of last year, I’ve had a limited range of motion in my wrists, they have become extremely weak (gone are the days when I could brag about how many push-ups I could do! My wrists will no longer bend enough to get into push-up position, let alone support my weight!), and they have been very painful.  I switched medications in December, and as the new drug began to work, the pain died down.  The weakness and limited range of motion remain, however.  It makes holding things in my hand, without support from my arms, very difficult.  Even a coffee cup can feel heavy to an RA wrist.  I struggle most when cooking (another beloved hobby).  Pots and pans full of food or water have become difficult to manage and many tasks that once required a single hand now require two.  Kneading bread dough is also a challenge.  But I’ve adapted as best as I can!

Beyond the daily tasks, RA affects my life by requiring me to take expensive drugs and adding an extra element of uncertainty to my future.  I never envisioned having to give myself injections every week just so that I could get out of bed and live my life, but that is where I’m at.  My RA has always been pretty well controlled, but that could change down the road as my body becomes accustomed to my treatments or as the disease progresses.  As Tom and I think about having children, my RA has to be considered.  For example, I had to determine what medications would be safe to take during pregnancy if I did conceive, and I have to consider the possibility of having to care for a child while I am experiencing an RA flare and have difficulty lifting as much as a coffee cup.  

Thinking through some of these things can be scary, and that can also add emotional stress.  My faith has helped carry me through all of my trials, though, and I have learned to trust in God to be my strength each day.  I’ve also been blessed to meet some amazing people who also suffer from RA, and I have joined the Rheumatoid Patient Foundation in an effort to help promote patient advocacy, increase education and advance research on rheumatoid disease.  The online RA-patient community has been a huge encouragement to me, and I, in turn, hope to be an encouragement to others.  God has blessed me greatly even through my health challenges, and I know that he will continue to work good things out of it.

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Hi there! My name is Dana and I live in West Michigan with my husband, Tom and our dog Copernicus. I created this space as a place to share the things I learn along this journey I call life. I work in marketing and I'm a sort of Jane of All Trades, interested in all things nature, gardening, cooking, exploring and learning new things. This blog is a conglomeration of my interests, hobbies, life and life lessons. Thanks for stopping by!