I was recently (formally) diagnosed with rheumatoid arthritis. I felt that writing about it would be a great coping mechanism for me. Many events have transpired to get me to this point, so if you feel like you’re in a boat all by yourself, this blog may make you feel otherwise. I’m here to try and speak for you too. I promise you, it will not be all gloom and doom.
Another reason I want to share is to educate others about this vicious disease. As stated above, there are so many people hurting; not only with rheumatoid arthritis (RA,) but also with a plethora of other debilitating illnesses that you may not physically see.
Rheumatoid arthritis is an autoimmune disease that causes the body’s immune system, (that normally fights off bacteria and viruses,) to mistakenly attack healthy tissue. The healthy tissue that it targets is called synovial fluid which is what lubricates your joints.
It’s so frustrating to fight this inner battle (my alternate universe) of chronic pain. Most people think I’m fine because there are no physical signs for me at this time. To try and TELL someone what I’m dealing with just doesn’t seem to get the point across. Much of the time I may just tell people I’m ok even if I’m having a particularly tough day.
I honestly wanted to keep it all to myself, but at the same time, I want to shout it to the world! I don’t really have a plan. I am just going to write, but I’m NOT going to start at the beginning. I am going to start right here, right now…March, 2018.
As I sit on the couch, my feet are hot from the inside out, like there’s fever in them. My ankles are aching and swollen. I wore flip flops again today to work. I didn’t even take my beloved high heel shoes like I normally do. I generally put them on later if I’m feeling pretty good. It was so cold outside this morning, yet my black Sanuk flip flops were the most important part of my outfit. The cold actually felt good on my feet.
My knees literally feel as big as watermelons but they are not hot like my ankles today (thank goodness…a slight reprieve.) I’ll take anything I can get at this point.
My hands; however, ache and burn like my ankles and feet.
These are just a FEW questions that I just asked myself today…
As I approach a door…any door, I inwardly hesitate. (I say inwardly, because if you are with me, you may not see me hesitate.) I look at the doorknob and say, “do I REALLY need to open this door? Can it wait? Is what’s on the other side of this door really necessary?” It’s like the door knob is a beast with teeth and if you wrap your hand around it, it’s going to bite. I reluctantly open the door with a grimace on my face because the pain is just overwhelming. Every bone in my hand SCREAMS at me for opening the door. Even the hand I didn’t use is mad at me.
Then there’s steps. “Really? Must I go up (or down) these steps today? Why would I want to subject my ankles and knees to such torture? Who invented steps anyway? I need to have a word with them.”
I get in my car. “Do I really need to buckle my seatbelt? If I get pulled over by a highway patrolman, will my little sob story convince him NOT to give me a ticket? It is excruciating to wrap my hand around the seatbelt and pull it across my body. I feel like I’m a contestant in the annual truck pull event and I’m the loser for having to participate, but the winner when I get it fastened. What’s even worse, is the simple task of pushing the button to release the stinkin’ seatbelt, but don’t worry y’all. I haven’t gone without it, although it is sometimes tempting.
These three “simple tasks” happen within one minute of my day when I leave my house each morning. Imagine how many crazy questions and comments zip through my head throughout an entire work day! Making it through a day of mundane and simple tasks for most, are amazing feats of accomplishments for some. Yay me! Be happy for me, and please let me do them. (No pity please.)
This past month, there was a miscommunication between my rheumatologist’s office and my specialty pharmacy, so I missed a dose of what I have found to be a VERY IMPORTANT part of my physical health. I haven’t been on this particular medicine very long so this was my first refill. It was an honest mistake and I am not upset with anyone involved.
What could missing one dose do anyway? It certainly couldn’t all of a sudden place me back in the alternate universe that I lived in from June 2016 to November, 2017…OR COULD IT?
And because I always want to end on a positive, lighter note…
“I’M GOOD, I’M GOOD!” This will be very funny to a select few people, and this is how I will end each segment from now on because it’s my battle cry. This was uttered by me when I was at my absolute worst. I will share this story with you in a later post, but I promise you, it won’t be nearly as funny as being there. 🤣 Ok…funny? While at my worst? It’ll make sense later.
Carry on…and smile along the way.
Nahum 1:7. “The Lord is good, a strong hold in the day of trouble; and He knoweth them that trust in Him.” KJV (always)