I haven't talked much about flares. I've always just explained what I would consider baseline life; the pain that is "usual"..."average". Being that I am still able to remember what life was like when I had more pain-free moments than pain-full, I can equate my baseline over the last year to be like the ache & pain a typical person might get during their worst flu; It's always there, some movements or moments bring on a larger, gripping pain- a crescendo- screaming a piercing vibrato that ebbs and flows through out the day, with that same nagging flu pain keeping a constant tempo in the background throughout the body. That's life, I can manage it with diet, rest, exercise, etc and internal strength. A flare, however, is like fire and brimstone within every joint and connection of muscle & tendon onto bone. It's sears deep into my sinews where no hand can massage and radiates there, migrating every which way. A lot of things can bring on a flare; gluten, dairy, high fat anything, stressed, too much activity, too little activity, heat, cold and of course, nothing. This current flare looks to be brought to me by most of the above, namely stress, too much activity, extreme heat and stress (I could say it again, but you get what I mean) and it's all been going on for several weeks, which is probably why it's the worst I can remember feeling. I feel like it's concentrated in my every capillary, tendon & marrow and is trying to swell & combust to oblivion.
I hate this feeling- that this pain, this defect running in my every cell, is bigger than me; because my spirit feels so much bigger than this- yet I can't get on top of it. I keep remembering that this probably won't last forever, and even if it does, than I have other medical options at my disposal that I've been saving for this...I just don't want it to be time yet. I need more time to be able.
I have a lot going on, a lot I want to share, but first, I am determined to share my trip to California; it was magic & solace & love. I hope to be back blogging later this week to share.
Until then...I'm trying to break through this. I have work to do, and I have kids who are looking at me; my body- their future- who I have to show can make it through this too. If only I could do it for them...
Thinking of you.
ReplyDeleteI read this in my email...and didn't come comment like I should have.
Your description is very vivid, and heartbreaking...you are an inspiration.
I hope things are better and you are having a wonderful, busy, fun filled life is why you are away...
If not..I hope you are as well as can be.
Hello! My 18 year old daughter was diagnosed with EDS a little over a year ago. I would love to have some advice from you as well as to know who your doctor and rheumotologists are. We are struggling to find a good match for her.
ReplyDeleteKendall, thank you for stopping by & telling me about your daughter. I hope that she will wander over and read my blog. What area do you live in? I can see if I know of any Dr's or Rheumys who might be able to help.
DeleteI believe I read that you lived in Sandbridge. If this is true, we live a few miles from you as the crow flies in Knotts Island. So, the Tidewater area of Virginia is where we are looking to find good doctors. She saw a rheumotologist from CHKD for a while but it was not a good match at all. Now, we are trying to find an adult doc that she can hopefully be with for a while. We have been given permission to travel to John Hopkins for a consult by our insurance company. We have had that appointment for over a year and it is scheduled for February. Any advice you have to offer would be greatly appreciated :) Thank you.
DeleteI myself and looking for a rheumatologist who knows a thing or two (I'd settle for one thing!) about EDS, but have yet to be successful. I do, however, have a wonderful General Practitioner who I see up in Great Bridge, Chesapeake called Dr. Anna Loomis. While she is new to learning about EDS, she has taken a personal interest in helping me find other specialists that can help. I too am looking to travel to Johns Hopkins, though my situation has deteriorated quite drastically in the last few weeks, I am hoping that she can pull some connection to get me in sooner than later. (news on that to follow on a future post).
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