Lately Life has been hard for me as I discussed a few days ago about my illness and fatigue. I still feel like I have the flu on top of all my usual symptoms and in addition I’ve chosen to come off my opiates, it was a personal choice I don’t believe a pack of bandages every month is useful to someone with a large open wound. I just feel so uncomfortable and sick lately that it’s hard to sleep so I end up staying awake all night into the early morning then taking nas throughout the day whenever my body forces me too.
This is one of the first weeks in a long time that I’ve used my wheelchair again and been using my rollator instead of sometimes only the cane. Only utilizing my cane hasn’t been realistic lately, I simply just don’t have the energy to do what I need to or what I want to. I haven’t gotten any work done lately, answered emails, or done much at all besides pray something changes soon because I can’t handle much more of this. Honestly it isn’t that I haven’t wanted to write it’s the amount of sheer pain and inflammation I am feeling. Heck I am only typing this because I spent the ENTIRE day trying to write just a few words and got nothing done. My skin has a slick film of sweat all over it, I’m swollen all over especially in the right wrist from falling today, and I can barely eat I’m just too damn nauseous.
I just wish I had some guest bloggers or perhaps a few volunteers to help me when I get stuck in a bad situation like this to help continue to bring traffic to the website. I’ll have to create a system and a sign up feature perhaps run a contest or something to try and find some fellow advocates that want to share a common stage to bring ourselves in total a much larger audience. Personally I want to grow my audience so whether you bring mye 10,000 new followersx or 10 I appreciate working with any fellow advocate who can write well. It can be poetry, sharing portions of a book in progress, whatever my guest bloggers want to do relating to chronic illness is great so long as #1: You don’t misinform the audience and if you do you apologize and then fix it and #2 You care about the patients coming before profit and realize blogging is a hobby. So long as you can understand and comply with my two main rules you’re free to submit articles to me for publication on this website.
As for my health I will deal with it in the future hopefully sooner than October, but Johns Hopkins Vasculitis experts may not be able to see me until then. The NIH sent me to see a Neuromuscular specialist and to go through a complete gamut of testing with the vasculitis experts at Johns Hopkins the man on my case will be Dr. Philip Seo who runs the Vasculitis unit and to my luck and benefit is interested in ANCA vasculitis and rare vasculitis. I am confident that in the very capable hands of the staff over at Johns Hopkins that they will be able to confirm my diagnosis and correct my treatment path. I do not know when this will happen exactly right now we aren’t scheduled until mid October but we’re hoping to go earlier, it’s the only event that would stop me from going to the Cluster Buster’s Conference in September which takes place in Nashville, TN.
Anyway I truly hope you’ve enjoyed seeing another article to let you know what has been going on I know it has been a while since I missed so many days in a week. I really hope to take advantage of it when I feel better and type up many many articles on all sorts of subjects for release later when I’m too sick again. I don’t think failing is a waste so long as you learn from it so I’m taking this inexperience as a minor failure of my commitment to writing and I will make sure I never miss a day releasing articles again as long as I can help it at least! Thanks again for reading and please share my blog with all your friends, family, and your community- whoever you might know that’s dealing with chronic illness in some way.