November, er, Nervember, is nerve pain awareness month and CRPS is certainly a pain, so we are doing our part in raising awareness. Today, the first Monday of November, is Color the World Orange Day – a day to specifically raise awareness about CRPS/RSD. Orange is the awareness color of CRPS so I am wearing orange today, even though it is the one color I would be least likely to ever willingly wear. Funny side note: Emily has detested the wearing of zebra anything as EDS awareness, which is weird, because who doesn’t like zebra print? Emily, apparently. But, she likes orange much better than zebra stripes so I guess that is a silver lining with all of this. She finally has an awareness color she is ok with.
Anyway, as usual, I will be sharing information about CRPS on my facebook page and here. Sometimes I think about all I do with Facebook is raise awareness but I am grateful to have that opportunity. Because heaven knows people need to know about CRPS. EDS is genetic but anyone can develop CRPS from the most minor, trivial injury.
So, while I am here, I will give you a little update on Em.
We recently saw Dr. Neilson (I plan on writing a post about some of the things we talked about – there were some things that might be of interest to anyone with EDS) and brought up the inordinately long wait to see the rheumatologist (when I made the appointment I was told the earliest she could be seen was January 29th which was insane considering this is an extremely time sensitive diagnosis). The good news was that a mistake was made in scheduling and we don’t have to wait until the end of January to be seen. The bad (frustrating, annoying, pull out my hair in disbelief) news was that we could have already been seen if they had scheduled it right in the first place. 😡
Moving on. We now have an appointment for November 19 and it can’t get here soon enough. If what she is experiencing is truly a full body CRPS spread (and I don’t think there is any other explanation), it is breathtakingly fast. If CRPS is like having a limb set on fire, what she is experiencing is a wild fire, eating up acreage at a frightening rate. I am trying to keep a timeline and a list of her symptoms as they pop up and we are trying to document the physical signs that we see. She has had some swelling but not much at this point and it is fairly subtle when it happens. Her hands and feet will turn bright red and shiny, then, when we try to take a picture, she moves and the color fades. But, I think it is important to document everything we can so we keep trying.
She is absolutely exhausted but is trying so hard to push through this and not give in. The symptoms she is experiencing are so frustrating: worsening brain fog, memory loss, insomnia, incredible pain and, unsurprisingly, irritability. November 19th can’t come soon enough, I tell you. Although, let’s be honest, there is no guarantee that appointment will yield any useful treatment. Which is daunting. But, I would rather face that possibility as soon as possible rather than wait until the end of January to find out. But, something has to be done. I have promised her that we will not stop until she has real treatment that brings her real relief.