Some time back, maybe a month or two ago, I went searching from some blogs written by people who have Relapsing Polychondritis. And amazingly I found some! It was so great to read about other people’s experience of this disease, and how it has affected them. I learned more reading their blogs than any of the medical descriptions or analyses.
But my joy turned to apprehension when I realized these people were no longer posting and the posts I had read were several months old! What happened to them? Is there a short time span between creating a blog, writing about these things, and then being TOO ILL to write anymore?! Paranoia abounding!! But that does not even begin to describe the ache and melancholy of being so close to connecting with someone only to find out that it is a ghost or shadow that you are chasing. For several weeks I lived with the possibility that truly there were only three to five people out of a possible million that shared this condition with me, and they were too ill to even peck out a few words on a keyboard and then post it!
But I determined to be brave, and not give up my internet searching. So I fired up the computer, input some key words, and went searching the internet again. This time I found a while webpage, and on Facebook at that! for Relapsing Polychondritis. But instead of sparseness of content I found several webpages dedicated to RP and over 500 members on at least one of the pages! So I thought, if it is this “well-known” to spawn a Facebook page, how come is it so hard to find a doctor who has experience in the treatment?!
The most frustrating part is being stuck between this feast and famine, I am no closer to knowing what to do as when I started. I know now that what I am experiencing is very typical, if experiencing what 3 to 5 people out of a million experience can be termed “typical”! I still feel pretty alone.
An obvious solution would be to join the Facebook page or pages – but the question is, which one since I have yet to figure out if it is all one Facebook page or several pages for different purposes. But getting to know people on Facebook is hard if you have little or no connection to them outside of Facebook, or the interconnectedness of “friending” a friend of a friend. It is still just single me trying to navigate through the relative unknown.
Recently my mother asked and obtained my permission to tell extended family about my diagnosis. Some of them were not aware that this is actually my second autoimmune diagnosis, Meniere’s Syndrome being the first. That Meniere’s Syndrome overlaps with RP is an irony that should inspire more tears than it does laughter.
There may well come a day, and maybe that day is close at hand, that I will look back on February 2014 as the beginning of connecting with other RP suffers and finding the support group/network that I am looking for . But today, that is the day that this posts I am still feeling pretty alone. If you, gentle reader, know of someone that or who is someone that has an autoimmune disorder, I ask you to take the opportunity to connect with me. I am convinced that that only thing worse than going through this is going through it alone. But have reason to start to believe that I am not alone – I just don’t know yet the names of the people who are with me.
It is my hope and prayer that what ever you are going through, not matter how minor or severe, you are not alone. Selah!
Pondering From the Pacific 