Saturday, September 26, 2015

The Onset of Rheumatoid Disease & How I Cope


**This post is a part of the first annual RA Blog Week, spurred on by RADiabetes. For more information and the full list of prompts, click here.

RA Blog Week Day 6 Prompt: "tell us your stories about your diagnosis, what were you thinking, feeling or when did you first know something was wrong?"

Oh, college days of yore...
It was a sunny spring day in 2004.  I was 19 years old, and a happy, healthy college student at Cedarville University in Ohio.  Or so I thought.  It was almost the end of the semester when I noticed that a finger on my left hand was sore -- almost as though I had somehow jammed it.  I didn’t recall doing anything to it, but who knows--I was fairly active.  I ignored this symptom for a while, until I realized that it had been a few weeks and it had still not gone away or gotten any better.  My mom prompted me to make an appointment to see my doctor and find out what she recommended.  Nothing much was accomplished at my first doctor visit.  She simply referred me to a hand specialist.  By this point, I believe college was done for the semester, and I had moved back to Michigan.  I spent the summer living with my dad and babysitting my cousins, while taking courses at the local community college and preparing for a more permanent move to West Michigan.  At some point early in the summer I had my appointment with the hand specialist.  Based on my symptoms, he believed that I had tendinitis.  He prescribed some Naproxen, told me to take it for a few weeks, then he’d see me back.  

A funny thing happened in the coming days.  Not only was the medicine not helping my finger, but the pain had switched hands!  It was now a different finger on my right hand that hurt.  Whoa, that was weird.  Was I going crazy?  It was originally my left hand that hurt, wasn’t it?  Surely I hadn’t inadvertently, without realizing it, injured another, different finger?  I knew something was up.  I didn’t have tendinitis.  When I reported back to the hand specialist what had happened, he immediately referred me to a rheumatologist.  I had several appointments with the rheumatologist, during which he examined me and took blood tests.  Meanwhile, I was shocked one day to realize while babysitting that my feet were hurting me.  It couldn’t be that the same thing causing pain in my hands could also cause pain in my feet -- could it?  

My blood tests revealed a positive anti-CCP antibody and the presence of antinuclear antibodies (ANA) -- and probably several other things that I didn’t pay attention to -- and the rheumatologist eventually diagnosed me with Rheumatoid Arthritis.  He explained that this differed from osteoarthritis (though, at the time, I didn’t fully understand that difference), and told my mom and I that this was something that needed to be treated aggressively so that we could try to prevent the disease from doing any permanent damage to my body.  

I think I was in shock.  I always HATED being sick.  I know nobody likes it, but just the thought of being sick when I was a kid made me sad, frustrated and depressed.  I didn’t like anything that limited me from playing and being active.  Now I had a disease that was not going to go away, and was getting worse.  I broke down one day after babysitting and just cried.  I didn’t want to let this disease slowly destroy my body and take away my life.

And fast-forward to apartment life in West Michigan
Fortunately, my doctor did prescribe methotrexate (a disease-modifying anti-rheumatic drug) for me and had me start on it immediately, in addition to the Naproxen.  By this time, summer was almost over, and I was off to start a new life at a new college in a new town, with (hopefully) a new job.  I moved two hours away, and continued to commute back to my rheumatologist’s office every few weeks until we could get my treatment figured out.

At first, the methotrexate didn’t seem to be helping.  The pain continued to spread.  It sometimes kept me awake at night.  I began to walk with a limp.  I tried hard not to, and not to let anybody see that I was in pain, and even tried to tell myself that it wasn’t that bad.  I worked one job for a couple months, without any problems, and school was going fine -- except for the buildings that had stairs leading up to them--I had to walk stairs slowly, using the railing and putting both feet on each stair.  Of course, it didn’t make matters easier that I lived in a 3rd story apartment!  

Towards the end of the year, I was about to start a new job that required some clerical duties when I suddenly realized that I wasn’t sure if I was going to be able to hold a pen in my hand.  My fingers had gotten to the point where they were swollen and didn’t bend quite right -- or at all.  At that point, I was truly scared.

I had one more appointment at the rheumatologist, and he decided to up my dose of methotrexate.  I wasn’t convinced that it was doing anything -- until that point.  Once the drugs were in my system for a while and the proper dosage was determined, I started to see major improvements very quickly.  I no longer walked with a limp.  I could hold a pen and write without problems.  I wasn’t being awakened in the middle of the night with the deep sharp pain in my bones.  I still hand some symptoms: I had a lot of morning stiffness; I had one finger that still wouldn’t bend right; my wrists were very weak and oftentimes sore. I was better, but I wasn't cured.

I made it through our wedding day mostly pain-free!
Best day of my life: marrying my best friend.
I’ve always considered myself a strong and independent person, and a good problem solver to boot.  I’m also very stubborn and kept trying to convince myself that I could make this all go away if I only tried harder.  I tried all sorts of strange holistic therapies, but nothing worked.  In fact, I got worse. 

Shortly before my wedding in 2007 I had the worst flare in symptoms since my diagnosis.  It was mainly my knees, and it was to the point where I couldn’t stand still for more than a few seconds before I thought I might collapse under my own weight. I was terrified that I wouldn’t be able to remain standing for the duration of our brief wedding ceremony.  Fortunately, I found a new rheumatologist who prescribed my first biologic treatment (Enbrel) and got me back to feeling well in time for my wedding.  

During that process, however, something inside me broke.  I realized that my RA isn’t going away, and that this is something I can’t do on my own.  I feel pretty well most days, but I do still have bad days where I can’t ignore the pain or swelling, and I know the disease is only likely to progress over time.  Coming to terms with this was huge for me.  Through it all, I’ve identified three things that are essential in order for me to cope with chronic illness:

Beauty can be found, even amidst the thorns
I am a Christian, and my faith in God has greatly changed my outlook on my life with chronic illness.  I have learned that I need to rely on God to be my strength each morning and to carry me through each day.  I have likened my RA to what the apostle Paul called the “thorn in his flesh”.  He had some sort of ailment, and he pleaded with God three times to take it away.  But read God’s response:

“My grace is sufficient for you, for my power is made perfect in weakness.”–2 Corinthians 12:9

I cling to this passage whenever I feel weak, and it brings me hope.  I know and have seen that God can use even this to serve His good purposes.

Over the past couple years I have really learned the importance of having a community of understanding and support.  While important for everyone, patients in particular need to have a group of people they can turn to for encouragement, a listening ear, or to ask questions.  Family, friends, other patients and caregivers can form an excellent support network to help you through the ups and downs of chronic illness.  For me, personally, I have a great support community made up of my family (my husband and both of our extended families), friends and other rheumatoid patients that I’ve met online.  I’ve found Twitter to be a particularly useful tool to identify and connect with others with similar conditions.  You won’t last long if you try to fight alone – so I encourage anyone with a health ailment or chronic condition to seek out and surround yourself with people that will fight alongside you. could describe me as goofy.
As patients, sometimes we truly do need to laugh to keep from crying.  Other times it’s just fun to be light-hearted and be able to find humor in even the painful things of life.  I’ve always been one to appreciate humor and even silliness, because I believe that laughter really is the best medicine.  Laughing lifts the spirits of any soul and can turn even a bad day into a sort of comedy.  My husband actually brings the most humor into my life, and we often find ways to joke about my RA.  I’ve learned that other patients are very funny, too, and I’ve even started a collection of RA jokes, puns and funny stories.  While there may be nothing funny about chronic disease itself, try to find the humor that surrounds it and you’re sure to find yourself in a better mood!

My rheumatoid disease is not cured.  I still struggle sometimes mentally, physically and emotionally, but my faith, the people that surround me and my ability to laugh all help me to feel like I am taking steps to conquer this disease, to overcome despair and to hold on to the things that truly matter. Come what may, there are some things in life that illness just can’t take away.

Friday, September 25, 2015

To Move Or Not To Move, That Is The Question


**This post is a part of the first annual RA Blog Week, spurred on by RADiabetes. For more information and the full list of prompts, click here.

RA Blog Week Day 5 Prompt: "Exercise and RA – write about your favorite exercise. What do you like about it, and what keeps you going? Maybe you like to run marathons or do finger exercises. Perhaps you love to walk, or maybe stretching is your cup of tea. Maybe you are tired of being told to exercise? Give your readers the rundown on what does or does not move you."

I call this my "conquering RD" photo - a
successfully pain-free backpacking trip on
Isle Royale National Park
I've seen the issue of exercising with Rheumatoid Disease hotly debated. There's a huge push from most health organizations to exercise because it is good for your joints and will ultimately help you move better. Unfortunately, that's not always the case. I know a lot of people with RD who say exercise helps them tremendously. I also know a lot of people who say if they try to do any real exercise, they will end up in bed for a week reaping the repercussions. According to a survey of over 1,400 RA patients, conducted by the Rheumatoid Patient Foundation, 67% of respondents said that physical activity actually caused their RA pain to increase. Only 18% said physical activity caused their RA pain to decrease. So, what's the deal with exercise?

Here's the way I look at it: exercise is good for the body in so many ways, and an active lifestyle is of course healthy -- if your body is in proper condition to do it. But you have to listen to your body. For me, I can usually tell the difference between various types of pain caused by rheumatoid disease. There's the stiff, achiness that sometimes infects my joints and makes it difficult to move. In this state, I find that moving and stretching does, in fact, loosen up my joints and help me feel better. This is like the traditional "morning stiffness" that many people with rheumatoid disease experience (though not always in the morning!). Moving around and just getting on with everyday tasks often helps loosen me up and get me to feeling better. Unless...

...unless I'm seriously in a flare. A real "flaring" joint to me is different than the dull achy or stiff joints. It's the joint on fire, hot, inflamed, feels-like-it's-broken sort of pain. Have you ever tried walking with a broken ankle? Ever tried lifting things with a broken wrist? I'm pretty sure your doctor would tell you that a broken or sprained joint needs to rest. You can damage it further if you put too much strain on it. To me, it seems to work the same way with RD. If I have a flaring joint, stressing it out by applying to much pressure or overusing it (sometimes that's using it at all!) will only cause more pain and inflammation. These are the joints that benefit from rest. Never mind the fact that sometimes there are joints that you simply physically cannot use, even if you want to.
I even got Tom to join me in some yoga before our long
flight to the UK last year!

There's also a third scenario: exercising yourself into a flare. I've done this a few times. I was feeling pretty well, then I had a period of heightened physical activity, and it left me in a state of long-lasting flare, with angry joints and inflammation that I didn't have before said physical event. An example would be backpacking. My first couple of trips, I felt great going in, and miserable coming out. It was the strenuous activity that pushed me into a flare. The same thing  happened on my last ski trip (ouchy knees in the night!!). I've since learned to take preemptive measures to protect against this, and I now request a burst of prednisone from my rheumatologist if I know I'm going to be traveling or doing something more physical than normal.

All in all, I say, move what you can, and rest what you need to. You know your body best and how it responds. Listen to what your joints are telling you. I love doing some basic yoga moves to help stretch out my body and loosen me up -- which I something I can normally do, even if some of my joints are flaring. I can even be caught doing "office yoga" in the middle of the work day sometimes. It feels good and leaves me feeling better.

Of course, my favorite way to "exercise" when I'm feeling well is gardening. It's a lot of hard work, and sometimes does leave my hands swollen -- but this is my one activity that is "worth it" even if it causes me small amounts of pain and swelling. Fortunately, I've been mostly well lately and have been able to enjoy my vegetables and flowers this year. I think for most of us, there is a physical activity that leaves us feeling better not just physically, but mentally and emotionally. For me, that is being out in nature and enjoying the beauty of creation -- whether it be in my yard and garden or on a hiking trail. When your body says, "go," -- then go, and enjoy whatever it is that you enjoy best.

Nothing can stand between a girl and her garden!

Thursday, September 24, 2015

5 Things I've Learned Through Life with Rheumatoid Disease


**This post is a part of the first annual RA Blog Week, spurred on by RADiabetes. For more information and the full list of prompts, click here.

RA Blog Week Day 4 Prompt: "Five things I have learned – write about the five things you have learned about yourself, or RA. Perhaps you have learned what things like physical pain, injections, or morning fatigue are like? Perhaps you have learned new things about yourself?"

I think it's often true that the difficult times in our lives are the most formative and provide the greatest opportunities to grow and learn as a person. Life with rheumatoid disease certainly provides ample trials, but it is up to me to learn something and somehow become a better person because of them. Here are five things that I have learned from and/or about rheumatoid disease:

1. This Disease is Ruthless
This disease is ruthless. It doesn't discriminate. Anyone can get it. It sometimes it attacks sneakily, and sometimes it comes on hard and strong. Treating rheumatoid disease (RD) early and aggressively provides your best chance of preventing irreversible damage, disability and daily pain -- but it's still no guarantee. Even as someone who has responded well to treatments and lives a mostly normal life, I've still learned the hard way not to ignore my symptoms. After a flare that lasted a few months (which I tried to convince myself was not that bad) -- and was between my already scheduled rheumatology appointments -- my wrists suffered permanent joint damage which will affect their functionality for the rest of my life. Inflammation can be destructive and it is fast-acting. If you think you might have rheumatoid disease, or are already diagnosed, do not delay treatment. If you have a flare, contact your doctor -- it may be time to change treatment regimes. I've been fortunate to have my disease under decent control most of the time, but just when I start to think I'm fine, a new symptom shows up to remind me that RD is still there. There is no cure, and this disease is progressive and chronic -- tending to get worse over time. In short: it's an ugly thing. It is not "just arthritis" and people need to know that.

2. There's Always Someone who is Worse Off
I used to have pity parties for myself. I HATE being sick. Being diagnosed with a chronic illness? It was devastating. I was young (diagnosed at age 19), yet my body felt old and beat up, sore every morning and often waking me up at night. It wasn't fair. Poor me. And then, I met some other people with this ugly disease, and I learned something enlightening: I didn't have it so bad. The swelling and soreness that I experienced was nothing compared to the daily pain and disability endured by many people with rheumatoid disease. The medications I took did help significantly. I soon learned there was about 1/3 of the rheumatoid patient population who didn't respond to treatments at all. Yikes! And guess what: most of these people were not out there moping and feeling sorry for themselves. They were doing what they could to make the most of each day -- whatever that may look like. Okay, lesson learned: time to straighten up and focus on others instead of myself. Which brings me to my next point.

3. Something Beautiful Happens when People Come Together
Having been humbled by the others I met online with rheumatoid disease, I decided it was high time I join in this community and see how I can contribute. I jumped on the Twitter hashtag "#rheum" as soon as Kelly of RAWarrior created it -- and it was the best thing that happened to me related to RD. I met lots of other people in similar situations to myself who I was able to learn from and who encouraged me -- and I, in turn, tried to be there and encourage others. I have made some very cool friendships and met some amazing people I never would have met without this disease. Joining together, with a common cause, we've been able to not only bring hope and encouragement to one another, but also bring education and understanding among healthcare professionals and the general public. I am honored to have been able to be a part of patient-led initiatives toward better treatments, care and awareness of rheumatoid disease. When patients, care givers, doctors, researchers, and other healthcare professionals work together, amazing things can be done.

4. We Have a Lot of Work Yet to Do
Rheumatoid Disease treatments and general awareness have come a long ways in the past 10-15 years. But, there's still work to do. Remember that group of patients I mentioned that don't respond to any of the currently available treatments? And the fact that there are only treatments, there is no cure? We need to keep up research that will hopefully someday lead to a cure for this dreadful disease. In the meantime, we need to work to ensure that patients are receiving the best possible care, early diagnoses and access to treatments that can help prevent pain and disability. The strides made by the Rheumatoid Patient Foundation and other patient advocates, coupled with the new research and developments in treatment options all make me very hopeful -- but that doesn't mean we can relax and slow down. Let's keep fighting for a better life for everyone with RD.

5. Some Good can Always be Found
Lastly, rheumatoid disease has taught me that some good can always be found in every situation. There is always hope, there is always something positive to cling to. Life with RD can feel like a losing battle. Some days you may feel overwhelmed, with the future uncertain and the feeling of hopelessness creeps in. But I believe there is always hope. And you can always be grateful for today. In the hardest days you are faced with a choice: giving in to despair or choosing joy despite the circumstance. I'm reminded of this scene in the movie "The Two Towers" of the Lord of the Rings trilogy -- even when things seem hopeless, don't give up:

Life with RD has its share of day-to-day annoyances, too, which I think is where I am more likely to focus on the negative without even realizing it. I think of the inconveniences at the pharmacy when my prescription isn't ready or isn't right -- even after I already talked to them about it (five times): I start to complain and then realize how much there is to be grateful for. Good insurance. Access to medications. A doctor to prescribe them. Treatments that actually work well to keep my disease activity low. Whatever is getting you down, big or small, I challenge you to focus on the good. Some days you have to look harder to find it than others, but I promise it is there. Keep on fighting and never lose hope.

"Even in the darkness light dawns for the upright..." --Psalm 112:4

Tuesday, September 22, 2015

Rheumatoid Disease Update: The Eyes Have It

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, and today (Day 2) I'm opting to do a "wildcard" post and choose my own topic: a health update!

It's been a while since I have written a rheumatoid disease update. There's a *good* reason for that: there hasn't been a whole lot of change the past couple of years! My pain and inflammation have remained steadily low on the Hydroxychloroquine and weekly Humira treatment combination.  I do still take Naproxen as needed - but it's about once a day or every other day.  I am very grateful for the time I've had without much pain. My wrists are really the only thing that have still bothered me, and I'm pretty certain most of the pain there is from permanent damage. Actual, active disease activity is pretty low. Praise the Lord.
I was going for a picture that focused on my
eyes, but I think what I got was: Bobblehead.

However, I have had a new development in Rheumatoid Disease (RD) symptoms this year: the eyes have it. This is just one common example of how rheumatoid "arthritis" is a misleading term -- you can't have arthritis of the eye, as it's an organ, not a joint -- but RD can still affect it. I have known for some time that many people with RD also develop Sjogren's Syndrome, an autoimmune disease in which the immune system attacks the body's moisture-producing glands, creating symptoms like Dry Eye. I had never had eye problems before and while I think the symptoms slowly crept up without me noticing, eventually it hit hard and strong. 

My husband and I were enjoying the company of some friends, eating dinner and playing board games. In the middle of the game I had that very distinct feeling of something (like an eyelash) in my eye. I kept going to the bathroom and looking in the mirror, but there was nothing there. But there had to be. I could feel it. Come to find out, dry eye can cause that same sensation. I was due to have my eyes checked since I'm on hydroxychloroquine anyways, so I scheduled an appointment. In the days leading up to my appointment, my eye symptoms continued, though not as severe. The ophthalmologist was confident that it was the rheumatoid disease attacking my tear ducts and causing the problem. He told me that the symptoms must have come on slowly, because both eyes were very dry, and if it had come on suddenly, I would have been extremely uncomfortable. Instead, it was more of an irritation -- my eyes felt strained and tired, sometimes they hurt slightly, and occasionally I would get that sensation of a foreign object in the eye.  The ophthalmologist prescribed Restasis eyedrops for me, which I immediately began taking -- meanwhile the dry eye symptoms were becoming more prominent and now I could feel it in both eyes.

It took a few months for the Restasis to fully kick in, and I developed some other problems along the way. Just as my eyes were starting to feel better during the day, I kept waking up with what felt like my eyelids glued to my eyeballs. They were SO hard to open. I mentioned my eye symptoms to my rheumatologist while I was there, and I now have a Sjogren's Symptom diagnoses added to my medical chart.

And then, my eyelids got inflamed. It looked and felt like dermatitis and my top lids swelled up around the bottom edges. After trying to combat that on my own for a while, I finally made another trip to the ophthalmologist who confirmed that I had blepharitis: inflamed eyelids. I was then prescribed a treatment regiment of eyelid washing, hot compresses and an antibiotic/steroid ointment. Whew. After a couple of weeks of that, my eyes are finally back to mostly normal. I am continuing the Restasis, though don't always take it twice a day anymore, and I am keeping eye on those lids! Er, a lid on those eyes? You know what I mean.

While the eye issues have been an annoyance, I would take that any day over the joint pain I've had in the past.

Monday, September 21, 2015

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!

Sunday, August 23, 2015

2015: The Volunteer Garden

Now that it's nearing the end of August, I suppose it's time for a 2015 garden update. One of the things I've learned to love about gardening is how each year is so different. The first few years, I found this very frustrating: what grew well one year didn't grow well the next. However, I've learned to instead appreciate the things that do grow -- especially the surprises, which this year was full of. My mainstays did not do the best this year.  Lettuce grew okay, but not great. Radishes didn't produce much. For the first time, my carrots did not grow (I think the seeds got washed away!). The nice neat little rows that I had last year were not existent this year. The green beans grew pretty well, and some of the plants got huge!! The peas also grew well for the first time in a few years, so that was exciting. The tomatoes did not do as well as I'd hoped, but I've gotten some -- at least enough for salsa, bruschetta and a small batch of tomato sauce so far. Cucumbers were abysmal, as usual. What was most fun about this year were all of the surprises.

Wednesday, August 12, 2015

Cucumber Melon Summer Salad

cucumber watermelon cantaloupe summer salad with feta cheese recipe

Before I get into tonight's delicious summer recipe, I need to do a plug for our CSA. Did I tell you we joined a CSA this year?  CSA stands for Community Supported Agriculture -- and is basically an association between members of the community and a local farm where you buy into a share of the farm's crops that year. I've thought about doing it for years, and this was the year. We are CSA members at Chimney Creek Farm, and it has been amazing so far! We bought a "half share" which ends up being about two bags of produce every other week. Between that and my garden, we are eating our share of veggies this year! We bought into a "premium" share, which means we also get a few extras from other local farms -- including fruit, syrup, herbs and other fun goodies. Last week's share included cantaloupe and cucumber. I'm not a huge cantaloupe fan, but one of the benefits of a CSA is that it forces you to try new things and get creative in the kitchen. Knowing that I was unlikely to just eat pieces of cantaloupe, I went in search of some other fun ideas. I found some good inspiration on Pinterest and ended up creating my own recipe for a Cucumber Melon Summer Salad. It's a great side dish for a hot night, and what makes it even more fun is serving it inside half of a melon shell!

    cucumber melon salad in cantaloupe shell
  • 1 cantaloupe
  • 1 small watermelon
  • 1 cucumber
  • 1 Tbsp. fresh lime juice
  • 2 Tbsp. fresh basil, chopped
  • 1/2 cup feta cheese, crumbled

Slice melons in half horizontally. Cut around the edges and cut inside of melon into a grid shape to cube it up. You should then be able to scoop out the cubes pretty easily with a spoon. Cut any large pieces in half and add melon to a large bowl. Cut cucumber in half lengthwise, cut in half again, and then slice each quarter into pieces about 1/4 inch thick. Add to bowl. Add lime juice and basil to the mixture and toss to combine. Scoop melon mixture back into hollowed out melon halves (you may need to drain extra juices out of the melons - I added my extra melon juices to some tonic water with a squeeze of lime for a fun treat!). Top each melon bowl with 1/8 cup of crumbled feta.

cucumber melon salad dish recipe

This was an easy and fun summer recipe that paired well with grilled chicken. It's probably my favorite way I've eaten cantaloupe. Tom said he never would have thought of combining these ingredients, but liked it -- adding that it's the feta cheese that really made the dish. Give it a try on the next hot summer night when you don't want to heat up the kitchen!

watermelon bowls with cucumber melon salad with feta cheese