Patreon Account

I’m finally launching a Patreon account.

I’ve left Facebook and Twitter because of the caustic environment in both. I will probably unlink my Instagram account from Facebook. Still, I’m on hiatus from all social media accounts for a few months to reduce my stress and because I’m busy with summer school courses in my grad program.

I’ve been tinkering and toying with doing a Patreon seriously since my birthday, and I need more content, but I finally feel ready to start with the post that I authored initially, which is still timely.

I will try to keep this blog going because I do have updates to share, but I’m not quite ready to share them just yet.   I might discontinue this blog again if the Patreon takes off, and I need a break from talking about my own health.

I’m hoping that moving to a small subscription-based account will also keep negative people away and boost my creativity. I hope it will provide a buffer from many random friends of friends on social media accounts and some of their caustic comments and views on current events that do affect me.

Sign up here

I’ve kept the cost to a minimum but enough that it will make me do something each week, hopefully.

 

 

 

Quick Poll: Quarantine & Bloodwork

I’m conducting an informal poll to find out how many of my followers/readers/bloggers who require monthly labs have had to postpone their labs for a month or more.  This poll will run for a week.  Depending on the results, I might do another survey to dive down even more deeply. 

 

QUARANTINE & COPING

I am restarting this blog because of COVID19.  I didn’t have it but started quarantining in mid-March like most people.

But even though parts of my state are re-opened along with some businesses, I still remain at home most of the time.

I am on another break from my MSW program which I did start, but needed to take some time off for some family situations before the pandemic.

During the first few weeks of the pandemic, I tried hard to remain in my class since it was virtual but it was too hard trying to stockpile food and supplies and commit 20+hours a week to learning.

My professors are supportive and I know it was the right decision because I couldn’t force myself to learn something new and retain information.

Since I’ve entered stage 4 kidney disease I have more side effects and balance issues in particular.

I’ve fought off digestive issues and disordered eating and have been keeping a fever diary to see if there’s a pattern to many low-grade fevers I’ve been having recently.

I’ve been struggling with the quarantine but my depression is finally lifting some with the change in season and longer days.  I’ve been trying to take strolls around the neighborhood when I feel up to it.

I was struggling with typing for the longest since I’ve been having some neuromuscular issues with my fingers and wrists (specialists are still trying to figure that out).

When it’s safe again I’ll meet with the Kidney transplant team to talk about evaluation since my lung team told me it’s time to get ready for evaluation testing.  (My kidneys are functioning around 20 percent right now thanks to LAM & TSC.) I found this out in late February.  The thought about another transplant gives me pause but I’ll always go through the process to at least see if there’s a donor match out there.

I’ve had a few friends volunteer to be tested for me which means a great deal. But with the pandemic, something tells me this will be a longer process than it would be otherwise.

I’ve had some really dark thoughts and moments,  lost a few more friends (not to the virus), but even though some days I don’t feel the best, I’m still grateful to be here.

It doesn’t mean I love everything that happens with transplant and I’m still chronically ill so I have to be careful. That doesn’t bother me.

What bothers me are people who don’t give a damn about me by societal standards. There are certain people who think I’m expendable.

Well, I’ve got news for those people. I’ve hacked healthcare for about 15-20 years now, and I have no intention of stopping or dying by anyone’s hands but my Creator.

If that means staying in quarantine longer because I follow the science, then so be it.

 

 

 

 

 

All Good Things…Well, You Know…

I haven’t been updating this because I’ve had my hands full with grad school, life, and medical appointments.

I will be keeping this blog up for archive purposes because I think it might be useful for some people in the many communities I’m a part of but admittedly, I’m burnt out of maintaining it.

Perhaps later that may change, which is another reason I’ll keep it up, but I’m going to take a break from blogging & shift gears to other things for awhile.

Thank you for the support since I started this.  I truly appreciate it.

 

 

Long Time No Update

On December 2, I’ll be at 2 years post transplant.   In some ways it doesn’t seem it’s been that long, in other aspects it seems longer.

I had another blip in my lung function again but rebounded again.  I guess this is just an annual dip due to weather changes.  Which I’m not really surprised by.  I’ve always had sensitivity to changes in season.

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Passed The Year & A Half Mark

It’s been awhile since my last update.  In April, I had a procedure that kept me overnight & was my first surgery after transplant.  I have one more procedure after Labor Day, hoping this is the last of it for a good stretch.  This is the flare up of my TSC which usually acts up after the LAM settles down.

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“Support” Staff Blocking Care

I’ve had a few instances now where I’ve really lost patience with healthcare staff as of late.  As have other friends with their situations.  It’s a growing trend that needs to be addressed.  Some of these support staff are anything but.

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Ableism in the Academy–It’s What’s For Breakfast

This was a thought provoking post. I realize that disabled identity is a complex issue within many communities & I had my own thoughts but the insights here are so powerful I felt this was worth a reblog. I believe the root cause here is as SK points out the assumption that physically challenged bodies are someone else’s issue. This long held belief also takes root in the complexities that many people who identity as having invisible disabilities also face. This post addresses academia, but I’ve felt many of these insights in other aspects of my life outside academia. But it’s a great springboard into many other conversations…Thank you Stephen Kuusisto for this post & your permission to reblog it. I’m happy to have connected with you on WP.

Planet of the Blind

Ableism is akin to racism or homophobia but with one difference: the assumption that physically challenged bodies are “someone else’s issue” remains largely unexamined outside academic or activist circles within disability communities.   

—Stephen Kuusisto, before his first cup of coffee

You can’t include the disabled in whatever is meant by “diversity” until the problem above is addressed. 

—Kuusisto after his second cup of coffee  

That the disabled belong in special offices, sequestered environments, is a a hangover from the 19th century. Just as people of color or women still experience cruel 19th century headaches, the disabled do also. The academy taught racial separation, “the White Man’s Burden”, eugenics, and promoted the medical and psychological inferiority of women and people of color throughout the 1800’s and long into the 20th. The hierarchies of post-secondary-education in the U.S. remain in an amnesiac state—you see, I’ve even chosen an…

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