Am I the only one? When people ask me “how are you doing” or “how are you?” I just don’t know how to answer anymore.
I know that some people just want the “I’m fine, how are you?” response. But I can’t even give that convincingly anymore. (My face doesn’t let me lie even if I wanted to lol). I want to tell them what is really going on. But I know that is too much for most people. I need to find an abbreviated answer.
But for you…you all are either going to stick around and read this…or you’ve already clicked away having figured out that this is not really going to be about a particular craft.
So how AM I doing? It’s pretty rough actually. Well, it feels rough to me. I already feel guilty for saying it is rough when I know so many people have worse problems. But these are tough for me…and this is where I am when I am not creating.
In November, I was diagnosed with Ehler’s Danlos Syndrome. Never heard of it? Neither had I. Basically, it’s a connective tissue disorder that is genetic. I must have got it from one of my parents and my daughter has a 50% chance of inheriting it as well. My type is Hyper mobility (there are some more deadly types). Basically it means that I have a lot of pain that comes from unstable joints. I’m working a lot on what I can do to help it from getting worse. There is no “cure”….only treatments.
I regularly see a Dr for series of Injections to help regrow tissue (a painful, expensive, but thankfully slowly making a difference with my pain, experience). I’ve been working on changing my diet to be anti-inflammatory because that is major trigger for pain for someone with my syndrome.
The diet has been extremely challenging for me itself. I recently completed 4 week detox/cleanse elimination diet that was like hard core Paleo eating. No grains, No dairy, No sugar. No fun. I’ve been Gluten free since August in an attempt to be anti inflammatory, but I will probably need to eliminate more than that permanently.
I’m trying now to SLOWLY add foods back in, but it’s particularly difficult to see if they cause problems because I didn’t gastrointestinal problems before with them. I feel like I’m taking so much on faith and the long term goals of eating this way for my future and health.
It means that I spend days not able to move while I’m recovering from injections. That I’ve already eaten more avocados than I knew I would (it doesn’t help that I’m a SUPER picky eater to begin with). And I’m trying to be a good mom and wife…let alone sew, design, write here, etc.
I’ve recently decided that for my health, I really shouldn’t be quilting my own work anymore. Which means investing in sending my quilts out to be long arm quilted. Don’t get me wrong…I don’t mind that, but it’s not free by any means. lol In fact, as I write this, my back is in a ton of pain, partially due to trying to quilt something.
I’m a person who likes to be in control. And I’m definitely not in control right now. There are a lot of tears and prayers and doubt about what the future will look like. But I’m being as proactive as I can. Once I get the diet under control, the next plan is to tackle physical therapy/exercise that will strengthen my muscles. That is key because the other connective tissue is so weak, you need strong muscles to hold yourself together. So hey, maybe I’ll be a totally hot 40 year old in a few years! There’s hope for that bikini body yet. 😉
I tell you all this, not for loads of sympathy or attention. I’m just trying to be transparent. My word for this year is “Vulnerable”. And sharing this feels extremely vulnerable. But it’s also a reminder that I myself am vulnerable. Every time I choose a project to work on, I’m making that decision based at least partially on how I feel physically. Every time I blog or don’t blog, it’s based on if I can act like all I do is quilt and sew. But I don’t just do that. I live my life. And right now, even with some answers, I have a lot a questions and doubts and pain.
I hope to look back on this in a year and say “wow! look how far I’ve come from there”.
Right now, I feel I relate most to this: