I had another check up Thursday. My lungs are still doing great, but I wish I could say the same about my kidneys.
I started back on Rapamune (sirolimus) yesterday, so I’m confident that might help when it fully kicks in, as it did when I was pre-transplant.
This reblog comes someone I deeply respect & admire.
She runs our Chronic Illness Blogger Network & sometimes gets us some things to review or a little something in return for a sponsored post.
She also has gotten us into an organized group of our own to toss around ideas. I really enjoy the people I’ve met as a part of it.
On top of this, she cares deeply about the other bloggers she knows & can relate to the struggles of chronic illness.
Julie Ryan, thank you for reaching out to me & asking me to join the Chronic Illness Blogger Network. I have learned so much & have had my creativity challenged which is always a good thing.
Julie’s blog is really excellent. It’s called Counting my Spoons. This month I’ll be featuring some of Julie’s content & posts I’ve found extremely insightful & helpful.
I hope you will too.
Here’s the first:
Why Don’t We Ask For Help?
This was especially applicable for me to read because I’ve always struggled with this. I’m almost too stubborn & self sufficient at times, when I really shouldn’t be. But I really love what Julie explored in this post. So much of it resonated with me.
I bet it will with you, too.
(Photo credit: Photo taken from Julie’s “About Me” page.)
When this posts it will mark the anniversary of a scary moment where I thought my transplant listing would be completely derailed.
On the 8th, a year ago, I was in a very serious car accident that could have ended my life. I remember that time because I fought so hard to recover & it was excruciatingly difficult. I was hit head on by a reckless driver as I was going to exercise.
Disclaimer: “This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All thoughts & opinions remain my own and I was in no way influenced by the company. Join the Selfcare Movement here.
(This particular letter is not based on any one instance or experience but an amalgam of many different reactions & past experiences as well as stories shared with me by other people with lung disease & those that love them. Some of my response in the letter below is also based on things others wished they would have been able to say to other people when they had a less than pleasant experience.)
This is not going to be a political rant. Instead, I want to focus with specific examples on a clear lack of attention & glaring oversight that often happens on a particular issue in the political arena. This is especially with presidential candidates as a whole. The lack of addressing disability issues & ignoring the disabled vote as a whole.
I know posting this in the wee hours of the morning may not be my brightest move but I really felt compelled to.
If the every day person isn’t aware by now of the damage that ableism (discrimination or social prejudice towards people with disabilities) does, let me be the one to to shine a light on it for you.
(I also discussed this subject back on 11/10 in reaction to coverage of a news report)
This is an issue I continue to struggle with even having discourse about. How much of my reality/health status do I discuss with my employer & or colleagues? Do I disclose anything & when? If I’m looking for a job when do I bring the subject up? I came across this article. That’s what triggered these thoughts; even now, when I’m not working, because I remember those days all too well. They weren’t that long ago.
I want to thank David M. Perry for calling my attention to something distressing last night. It both sickened & shocked me, but then really as much as it “ground my gears” also had me examining my own thoughts & attitudes towards the two rare diseases I’ve been living with for so long.
Most of the time I pride myself on not having knee jerk reactions when I see things I don’t agree with. However, yesterday was different. I couldn’t help but have an initial one to a particular tweet & the articles within it. Yet, I knew that wasn’t the proper way to get my point across, so….here I am…working on a formal rebuttal just for a weekend kick & change of pace. Tangible, yet endeavoring to set my own emotion aside until the final strike about what triggered such a reaction.
Today, I managed to accomplish a few things, but not what I wanted. I felt OK this morning but had an energy dip today later along with some residual stomach stuff that’s been going around. However, I was still proud of myself of being able to work with a low energy equation. But sometimes, you get extra energy just by being. (Other people can also transmit a boost).
I know many post-transplant friends have told me that the experience changes you, but I had no idea how until recently. Not all the changes are painful; all are meaningful… Continue reading