Mobile Lab Draws: Ask For Them

If you’re lucky enough to have a health system that offers a mobile lab draw, do it.

My primary care doctor found this option for me, and I feel much safer. They come to my house, and I set up a table and chair in the driveway, and they draw the blood.

They also come in full PPE if you request it, but at minimum gloves and a mask.

I’m just sure to wipe everything I use down before and after. But it sure beats braving a waiting room or going to an office.

Evidently, my health system has had this in place for about 5 years, but hardly any doctors or patients knew about it until very recently.

I just thought I’d pass along this tip for anyone who could use it.

Looking for Another Alternative – Closed My Patreon

I took off and deactivated my Patreon because they made a ton of changes I didn’t like since I created my account. I also think the cost of creation would outweigh the potential benefits because they stuck me on a pro plan without my knowledge after I launched only two posts and before I had followers. Luckily I caught it before the billing cycle.

So you’re stuck with me here for now until I find another alternative.

I’m not on social media really anymore, so I know that poses a problem with building audience but that doesn’t mean I’ve given up on doing creative stuff or writing about other things, it just means I have to do a bit more research.

I’ve also had a lot of health junk come up but I’m not ready to talk about it yet until I have the full scope of the problem.

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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