Living life with multiple chronic illnesses…. and some other stuff!

Category Archives: Shadow

Hello my friends! I finally have my new laptop up and running on Linux! Whoot whoot! (yes, I am a nerd, I’m ok with it…lol). Anyway, lately i’ve been having more and more trouble and dislocations that I haven’t been able to reduce on my own. My hands have been getting worse and I am a very hands on type of person. I love to draw, knit, crochet, paint, sew, etc. But after only a few minutes into an activity, it’s as if my hands forget how to work/stop working. I am no longer able to sit up for very long, especially at the computer… so thank goodness for 2.5lb laptops!

I feel like everything is happening too fast. I can’t keep up with it and I have no idea what to do with myself. I am so restless with not being able to do very much, my anxiety is heightened. I keep on trying to think of things to do to keep my mind occupied. What it all comes down to, I think, is that I don’t “know how” to be disabled. Not that anyone should… it’s just that the transition has been extremely hard. I went from being “feircely independent” to being dependent on everyone. As of right now, I have no life. I don’t want to continue to live like this. I’ve started to take initiative to reclaiming my life… I’ve got Shadow, I have a power wheelchair which I have some ambivalence about (but if it is going to give me back some independence, I will try it), and I’ve signed up for the ADA public transport system. I used it for the first time yesterday for a dr’s appointment.

My vit D level is extremely low at 15 (about 30 is considered normal) and have been put on an 8 week course of high dose of vit D. Hopefully I can get my level up and will start to feel a bit better. My current goal is to work on becoming an advocate, I just need a place to start. Being part of this community is such a positive part of my life and I believe it will help me achieve my goals.

With all that said… I have my new laptop and will be around more often!!!!


…how strangers can be so caring for someone they have never met! I must have lost faith in humanity somewhere along the road, because I am really floored by some people. I have a youtube channel about how I deal with Ehlers-Danlos and other conditions. I was floored by the amount of views I had gotten, and even more shocked with the amount of subscriptions I’ve gotten. Then one day, out of the blue, I received a beautiful email from a person telling me what he’s been through and how much he appreciated my videos. As if I wasn’t touched already, he told me that he had made a donation towards my fund for my Companion/Assistance Dog Shadow. I couldn’t believe it, I had to read it twice to make sure I had read the email correctly. I am so grateful to him, and anyone else that has given me support, in any way. It all means SO MUCH to me!!!! Thank you, Matt, and everyone else. I am so grateful to everyone!!!