at the Water's Edge


Living life and learning all I can along the way!

The Onset of Rheumatoid Disease & How I Cope

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**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
Faith
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.

Community
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.

Yeah...you could describe me as goofy.
Humor
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.




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ABOUTME

Hi there! My name is Dana and I live in West Michigan with my husband, Tom and our dog Happy Gilmore. 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!

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