Living with RA · RA · Seasons

Invisibility

I’m home sick today. I’m writing most of this from the tub. The body that carried me to mountaintops this past summer is the same one that can’t get dressed without help today. 
 
With the exception of the bags under my eyes, I probably don’t look like I am struggling. I suppose there is good and bad in that. Good, because this is my path and I own it. Bad, because I am hoping for understanding and it isn’t always there. 
 
I’ve tried writing about this before. It always tends to sound whiney or needy. I am not looking for sympathy. I’m pretty sure no one has a magic potion, so I’m really not “in need” of anything. This post is really just about what it IS. I’ve recently joined a support group to engage others in similar circumstances in conversation about treatments, medications and side effects. We also discuss the fear and frustration. 
 
Rheumatoid Arthritis ( RA ) is in the category of auto-immune diseases. I tend to think of these as the “invisible diseases”. Often, there are no outward signs and to look at someone with RA, MS or Lupus, you might never know what they are up against every day. 
 
When I’ve written about this before, several people have said ” Oh yeah, I have that too”. Maybe they do, in which case my heart goes out to them. Mostly though, they do not. They may have it confused with Osteoarthritis ( OA ) which is challenging in its own right. OA is largely about age and wear and tear. It is much more common and with this form of arthritis, movement and exercise are encouraged. 
 
RA is different. It is not preventable, predictable or curable. RA occurs when your immune system mistakenly attacks your own body’s tissues. Unlike the wear and tear damage of OA, RA affects the lining of your joints, causing a painful swelling that can eventually result in bone erosion and joint deformity. This is a chronic inflammatory disorder that can affect more than just your joints. It can also damage a wide variety of body systems including the skin, eyes, lungs, heart and blood vessels. 
 
The medication I’ve been taking is a cancer drug used to shrink tumors. It has been used in some patients to slow the progression of RA. In my case, it doesn’t appear to be working well on its own, so onward I go through the fog, seeking whatever will help me find relief. One of the best things I can do for myself is rest. It is also the one thing my job will not afford me. 
 
We all have stories. This is just one of mine. We are not what ails us. We are not the hard days or the bad days. We are all of it. The good, the bad and the ugly.  Here’s to another year of mountaintops and amazing adventures. Thank you for taking time to read this ♡

 

 

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