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Buttoning My Shirt and Other Adventures of Living with RA

May 18, 2017

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“You’re too young to have arthritis.”

That’s probably the most common reaction I get from people when I choose to tell them about my condition. Running neck and neck with the question “What’s wrong with your arm?”

I don’t always find it necessary to disclose. It’s not contagious and trying to explain that there isn’t an age limit to RA is more tedious than explaining why my body is attacking itself in the first place.

Usually, if asked if I hurt my arm in the past I just nod. After all, that’s not a total fabrication. I hurt it everytime I bump into something or even simply moving it some days.

The fact is that at 31, I’ve suffered from Rheumatoid Arthritis for half my life. The word suffered is not to be taken lightly either. It hasn’t been a picnic whatsoever. Not even a sandwich and chips. It’s been hell actually.

rheumatoid arthritis pain joint pain

Aside from being in pain 85% of the time, and that’s low balling, I always have that little thought in the back of my mind that one day I may not be able to take care of myself.

What Is Rheumatoid Arthritis?

Let’s rewind this for a minute. Rheumatoid arthritis or RA is an autoimmune disease that causes chronic inflammation of the joints. Particularly the hands and wrists. However, RA can also affect the skin, lungs, heart, and eyes.

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Chronic inflammation of the joints can cause permanent destruction and deformity. Possible risk factors for developing rheumatoid arthritis include genetic background, smoking, silica inhalation, periodontal disease, and microbes in the bowels (gut bacteria). Mine was genetic.

Four Words That Changed My Life: You Have Rheumatoid Arthritis

I don’t remember the exact moment that it started, but I remember the pain clearly. My knees ached mostly at night. It wasn’t excruciating but it kept me up sometimes. Then came the swelling. Just puffiness at first. In school, the other kids noticed. Some even had pains of their own.

They were growing pains. We all had them right? My parents and doctor agreed.

A few of my classmates could relate but my case started to seem more extreme. My knees started to swell to the point that I couldn’t bend them. Getting in and out of my desk came with grunting and trying to keep the pressure off whichever knee decided to hurt that day.

I vividly recall limping or walking with one leg stiff in the 7th and 8th grade.  Even with my pain, I went out for the basketball team in 8th grade.

rheumatoid arthritis pain basketball

 

At some point, I started having a sharp pain in my right elbow. I could barely move it because of the excruciating pain. I told my parents about my arm now hurting. It was at the point that it not only hurt to extend it but I was unable to. It scared me. We were thinking I had injured it somehow.

Initially, the consensus was that I wouldn’t extend it because of the pain, but I actually could not fully extend my arm. I couldn’t even remember how long it had been like that but it couldn’t have been much longer than a couple of weeks.

I was sure that I had hurt it at basketball practice since I remembered it hurting after practice. I remember that I had to hold it a certain way for it to stop hurting. Even to be able to sleep, I kept it folded over my stomach so I wouldn’t lay on it or bump it.

My mom took me to the doctor to have it checked out. The doctor agreed that it much be a fracture. X-Rays showed inflammation but no fractures. Something wasn’t right.

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Finally, the doctors decided to run tests since my grandma and aunt had such chronic cases of RA. Lo, and behold I tested positive for the rheumatoid factor. How could that be? I hadn’t even started high school yet. I was too young to have arthritis.

After years of being told I was experiencing growing pains, I was finally diagnosed with RA at 14 years old. I was about 5’5″ in the 4th grade. (The boys called me Tree). So I’m kinda confused as to why for the next couple of years the doctors would think I was still growing enough for my knees to ache. I’m only 5’7  now.

I will say that the doctor actually monitored my growth to see how much I grew in a year or so. My dad was 6’3″, and since I was so tall already I was projected to be a giant. Thank goodness that was a bust

I was relieved to know that I wasn’t going crazy and what I was feeling was very real. However, I knew that the prognosis was not very bright.

Fifteen Years Later

“Knowing what you cannot do, is more important than knowing what you can do.”-Lucille Ball

I must say it has been trying. There have been many nights with little to no sleep. More recently I wake up with so much pain in my thumbs that I can’t pull the covers off.

Medications help some. More often than not I’m without insurance on waiting for my benefits to start at work so I can find a doctor.

My current job requires working a year before getting insurance. I was on my previous job during open enrollment so I don’t even have the option to sign up independently.

Over the years I’ve learned what I can’t do, what causes flares, and how to work around those things. While I can’t control the weather there are things that I can control.

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I know that performing anything repetitive causes and attack. Bumping into to something hurts 10 times more than it should. I now eat, drive, everything left handed, except write and my handwriting is still beautiful.

I can’t put my hair in a ponytail without help. Buttoning a shirt is 10 minutes of a bad joke, and I usually just throw the shirt back in the drawer.

Optimism Helps

“I have an auto-immune disease. I’m totally kicking ass. Too bad it’s literally my own ass getting kicked.”

Nevertheless, I’m positive. I’ve always known that anyone I brought into my life should be someone nurturing and caring, someone that would be willing to help me care for myself if it came to that.

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That terrifies me. I find it hard to let people help me so I’m doing what I need to ensure that it doesn’t come to that. Yet it’s a reality that I face every day.

I’ve been looking into things and have started to take a new joint pain supplement. Glucosamine and Chondroitin didn’t help. It might have even made it a little worse. It’s used for Osteoarthritis so it’s understandable why it wasn’t for me.

joint pain pills rheumatoid arthritis

I’ve also had two sessions of light therapy that seem more than promising. *insert happy dance*

The light actually works! It’s weird. The places where he’s done the light therapy have either stopped hurting or the pain severely declined. With the pain alleviated in those places, I notice that other places have started to hurt. If that makes sense.

I got a tooth pulled once then I noticed that another was killing me. There was so much pain in that one area that I couldn’t feel the other tooth bothering me until it was gone.

Since the joint damage to my arm is so chronic and has been long-standing I know relief won’t be overnight. Anything helps.

It slows me down, but it ain’t stopping me. I will definitely keep everyone posted on this journey. Stay tuned.

YYQ3XBYDAP

 

  1. Thanks for sharing. Learned much about RA. I like the optimistic approach you’ve taken towards it. I’m going to research more on it, as I have a friend that has it.

  2. I was missed diagnosed years ago now with RA… It turned out I really had Fibromyalgia. Anyway not saying that is you. I just mean I get your concerns and struggles. You have a a great outlook!

    1. I’ve always had concerns that I was misdiagnosed but the 22 vials of blood my recent rheumatologist drew proved the same outcome. His nurse called in a panic telling me My Rheumatoid factor was high. I was like well yeah I’m sure it is

  3. I totally empathize with you and feel your pain. I have the same diagnosis. Would love to connect with you and share what has helped me manage the disease and pain.

  4. Wow. I must admit I’ve never really understood RA. A couple of members in my family have it. While I’m sympathetic, no one ever really explains what it is, and it doesn’t seem right to ask. in fact, you’re not really sure what to ask. So thank you for this post. It has been a real eye opener for me. I’ll be sure to tell them about the light therapy you mentioned. Bon courage to you and your family. I will be sure to visit again to check on your journey.

    1. Thank you. I see a pattern of everyone being silent about it. It’s hard to discuss with someone who can’t relate

  5. Wow, this article showed me a realistic side of the struggles people with RA have to face daily. Even simple things can be a struggle. Thank you for sharing

  6. I’m so sorry for your struggle.i admire you incredible bravery to educate and share with others information about the condition and the challenges. Thank you!🙏

  7. Wow this is deep. I never really understood RA and how it affects someone that is diagnose with it, until now. Thank you for sharing and enlightening those that are misinformed.

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