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.

 

 

 

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.

 

 

 

 

 

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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“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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It’s Not Up To Those Who Are Hurting To Make YOU More Comfortable With THEIR Pain…

One of my volunteer friends died a few days ago.    A few mutual friends & I were talking not just about memories but also some really raw & visceral reactions from others in regards to our friend’s death being made public.

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Important Article: Hospitals Struggle To Address Terrifying & Long-Lasting ‘ICU Delirium’

I don’t mean to alarm anyone with sharing this.  But it is a concern that sometimes can or might happen to transplant patients or those in the hospital who need for surgical or other reasons to spend time in the ICU.

It’s also good for professionals to be aware of this too, so they can watch for signs to minimize the potential impact it may have on someone they love/care for.

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Rant: Can We Just Fast Forward Past Next Week?

I won’t discuss politics here because quite honestly I can’t stand the trolling this cycle. I don’t want trolls of any ilk invading my blog.

I thought the last two cycles were bad, but it seemingly gets worse & worse.

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Guest Blog Share: I Need To Tell You I’m Having A Panic Attack

Over the past few months, I’ve been sharing some of Erin Gilmer’s work from her blog.

Just so I have a few posts ahead of time in the summer months in case I get that transplant call.

But I would have ended up sharing this one at some point regardless.  Because it’s an important subject to discuss.

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