First post of The Health Activist Writer’s Month Challenge!
Ever since I was diagnosed with Rheumatoid Arthritis, 3 years ago, I’ve had a burning question. A question that I’ve really wanted to ask but that I also really didn’t want to have answered:
“Is this as good as it’s going to get?”
Over the past 3 years I’ve been on different injectables, pills, creams, etc. Some are supposed to reduce my disease’s activity, others should take away pain. Currently, my injectable, Orencia, seems to be working. I’m not noticing any new pain, stiffness, or swelling which means this medication should be reducing the disease activity in my body. This is a good thing. The only problem is that all of the damage done while I was waiting for a diagnosis years ago and all of the damage done a year ago when I was too sick to take any rheum meds, is just that, damage. It’s damage that I thought could be repaired. It’s damage that ,until I asked my rheumatologist that question, I thought was temporary.
During my most recent visit to my rheumatologist, at my usual 3 month follow-up, we discussed the effectiveness of Orencia and how we both thought we should give it a little more time to see what we can get out of it (I’ve had 30 weekly injections thus far). She then said, our goal right now is pain management and quality of life. Huh? That’s it? To me that sounds like giving up, so I had to ask: “Is this as good as it’s going to get?”. Is my elbow going to ever get better? Is it going to hurt for the rest of my life? Will I feel good enough to exercise one day and without reason, feel like I can barely walk from the car to my front door? Will I never sit cross-legged again because my left knee is so stiff? Will compression gloves and a knee brace be a permanent part of my bedtime attire?
The questions poured out. I expected my doctor to sugarcoat things with lines like “we’re going to fight this”, “there are still plenty of medications we haven’t tried”, etc. She didn’t. She said yes, my elbows would probably hurt forever. And my feet, hands, and knee probably would too. The damage was done before I was even diagnosed.
In all honesty, her answers didn’t shock me but they definitely were a reality check. I’m 35 years old. I have a husband and two children. I have things I want to do and places I want to go. No amount of work or hope is going to change my joints but I can definitely change my mind-set. Some days are going to be hard, I’m going to need to rest, dinner will be thrown together, and that’s ok. Other days, I’m going to be dancing in the kitchen and making my children laugh hysterically while I attempt to rap.
I’m hoping for more kitchen dances.
One week from tomorrow, I’ll have surgery on my left wrist. I eventually need to have nerve release surgery on my left elbow and my right wrist, but I’m starting off slow. I’m right handed so this shouldn’t be too big of a deal, right? Uh, wrong. All I can think about are all of the things I need two hands to do:
- Blow drying my hair. Yes it has to be dried every morning. I don’t have that wonderful type of hair that can just be pulled back into a ponytail (which, I should add, I wouldn’t be able to do any way because you need two hands for a
- Eye liner. Should be really fun trying to hold my eyelid and use the eyeliner with one good hand. Suggestions appreciated.
- Parallel parking. I do this every single day at work. Or, I used to.
- Putting my contacts in. This should be a treat. Thank goodness they’re daily disposables.
- Getting dressed. My bra, buttons, you get the idea. It’s not like I can wear sweats and sneakers every day. I couldn’t even tie my own shoe!
- Managing my Type 1 Diabetes- pricking my finger, inserting a new infusion set. Ugh.
There are some bright spots though. I’ve thought of some things that I won’t be able to do and I’m looking forward to not doing them:
- Grocery shopping. Push a cart with one hand? Not a good idea.
- Cooking. Definitely going to need help with this one.
- Dishes. Can’t really hold a dish and wash it with one hand, right? Especially while my stitches are in and I can’t get them wet.
Have you ever had an injury to your arm? How did you complete your normal activities? Any suggestions would be much appreciated!
The first thing I notice each morning, is my husband. Sure my alarm clock goes off or the cat bites my elbow, but I automatically deal with those things. Paying attention to my sleeping husband is my first conscious decision of the day.
I immediately notice the small, sweet noises he makes while breathing in and out. I notice how soft his facial features are..his boyish charm is visible, even in the darkness of our bedroom. I can feel his warmth without even touching him.
In response to The Daily Post’s writing prompt: “First!.”
My hope for 2015 is to simply be a better person. By strengthening my relationship with God, this can be accomplished. I aspire to be stronger in my faith, to allow God to fill my heart, and allow Him to speak for me.
In turn, I will treat others better and take better care of myself.
I often exclaim to my husband “Guess what?! I didn’t take any pain medication today!”. Does that mean I didn’t have any pain? Not necessarily….
Pain medications are prescribed for a very simple reason- to eliminate (or reduce) pain so you can live your life. Sure, it’s always a good plan to be on the least amount of medications possible. But shouldn’t the goal be to also be in the least amount of pain possible, with or without the use of medications? Why then do I feel like I need to prove that I can go a day without popping a pain pill? Last time I checked, there were no awards or gold medals given out to those who persevered through pain instead of just taking a prescribed aid.
I need to remember that right now I am fighting a real jerk of a disease (Rheumatoid Arthritis)…a disease that manages to disrupt so much of my life. As I wait for the big drugs to hopefully do their job (Orencia at the moment), why shouldn’t I take whatever I need to, to try to live my life to the fullest?
Starting today, my new exclamation will be “I didn’t have much pain today!”. I’ll be waiting for my gold medal.
To most people, these two brush handles look pretty similar. They’re both for round brushes which a lot of people, like me, use to blow dry their hair straight.
To me, someone with Rheumatoid Arthritis, the brush on the right is far superior. Why? The handle is made of this squishy gel that my swollen, achy fingers have no problem holding on to
forever for the 10 minutes it takes to dry my hair.
I bought that brush years ago, way before I got diagnosed with RA (3 years ago). I now wish everything could be encased in that wonderful gel: pens, whisks, vacuum handles, heck even my toothbrush!
I would love to hear what products have made your life with Rheumatoid Arthritis a bit better!
Tonight marks my 6th Orencia injection. A little part of me expects my body to do a total 360 within minutes of the injection. I almost expect to feel the Orencia go through my body, fixing every joint, reducing all of my pain, and waking me up like a cup of coffee should. I basically expect Orencia to turn me into a superhero. And yet, it’s done nothing.
I know..be patient. Wait. It takes a few months. I’ve heard it from my doctor, my husband, the little voice in my head, and from the makers of Orencia, thanks to their timely mailing reminding me not to give up.
I’m not giving up but each day I wonder what the end goal is. Is it for me to feel 100% free of Rheumatoid Arthritis? Is that even possible? Or is it for me to just be able to function a bit better, hopefully for a long time? Are things going to get worse?
I’ll wake up tomorrow and gingerly get out of bed, secretly hoping that the Orencia has given me superhero powers over night. And maybe, soon, it actually will.
Rheumatoid Arthritis sucks. But lately it’s not the constant pain and swelling or the overwhelming fatigue that’s got me down. It’s that RA is keeping me from doing things for other people. That makes me mad.
love loved to knit. You wont find many of my knitted projects in my house. Why? Because I enjoyed knitting for others. Baby blankets were one of my favorites. I loved picking out bright, non-traditional colors of yarn and working them up into a soft, beautiful blanket. I love hearing from friends and family, years later, about how much their child loved the blanket from day one.
And then there are prayer shawls. I made my first one nine years ago when my Uncle died unexpectedly. I needed to do something so I started knitting. My Aunt wrote me the most wonderful letter a few weeks later telling me that my cousin, who was 8 at the time, had been falling asleep with the shawl every night since his Dad’s passing. Fast forward to less than a year ago when my Aunt was diagnosed with cancer. She texted me that the prayer shawl had been with her, in her bedroom, for all of these years. Now that she was facing another battle, she was using it more than ever. I can’t explain what it meant to know that something I made was cherished year after year.
My second prayer shawl was made for my dear Aunt Melanie. My Aunt Melanie was diagnosed with Stage 4 Lung Cancer in the Spring of 2013. Again, not knowing what to do, I started to knit. I thought of all of the colors she loved and surrounded herself with and made sure my yarn reflected that. I wrapped up the shawl and put it in the mail to her in Virginia. I was unprepared for how much my Aunt would come to love and depend on that shawl. My Aunt wore it nonstop..she would text me and tell me she had it on at chemo and again to watch football on the weekends. She absolutely loved it. My Aunt Melanie fought a short but courageous battle with cancer and passed away in November, 2013. She passed away wearing my shawl.
I think of knitting daily. I started knitting square blocks a few months ago, in hope that “little” projects somehow wouldn’t cause me as much pain as larger, heavier ones do. Every week or so I’ll pull my knitting basket out (which makes my cat ecstatic) only to find that nothing’s changed…my fingers fall asleep holding the needles, my hands and wrists ache after just a few stitches. And now knitting is 100% out until mid-November at least, since I have a ligament tear in my wrist.
I feel guilty that I’m not knitting. I have two people, who immediately come to mind, that I would love to make prayer shawls for and plenty of babies that I would love to go yarn shopping for. As each
week month goes by, I lose a little hope that I’ll ever knit again.