Long Overdue Update

Since I’ve gone back for my Masters in Social Work my blog has taken a back seat. Also with family members dealing with the Long Haul COVID fallout as well as a few deaths in my support system and some family members with health issues I find myself at a crossroads.

I’m trying to decide long-term where my interests lie and what direction to take. I’m doing my first MSW internship starting in August and going two full semesters, so that will help me decide. It’s doing case management and a variety of other things that work with my past experiences so I think it will be a good fit. I know my internships will help me decide which direction I’d like to go ultimately.

However, I have wanted to do a side hustle using my past skills so they don’t get rusty, so I’ve been doing a lot of thinking about starting my own business for grant-writing and/or advocacy. I’m just not sure it’s sustainable. Yet I also want a back up plan in case some circumstance arises that make it hard for me to finish my degree. I plan to talk this through with vocational rehab soon since they’ve helped people with this before, to see if this is really something that can be sustainable.

My health knock wood has been stable in spite of many problems and I took the first part of this summer semester off to catch up on doctoring I had to delay because of the pandemic. I’m almost caught up but it’s been exhausting. I’m glad I took time off.

In the interim, I did get permission to do some gardening outdoors. I’ve gotten into using a Cricut Joy to make cards and have a few nice stamps as well. This has been welcome because my hands often don’t cooperate to write anymore. So many cards (esp. Sympathy cards) are so generic and impersonal that I had taken to writing messages on blank cards. Now, I can make them.

While I’m still getting the hang of some finer points, the ones I’ve made have been nice for rookie attempts at cutting some more intricate designs.

I’m also waiting to hear when I can get my third COVID vaccination. Until then I’m still in wary mode, and I’m feeling as I adjust back to going into stores that I’m still mindful of people who aren’t maintaining distance or safety and I’m learning to manage my anxiety from that.

Though it’s not talked about, I have been trying to manage my depression and anxiety as well. I needed an add-on med to make my depression medication work better. It has helped the month or so I’ve been on it. Many people in the transplant community struggle with depression and anxiety but are hesitant to say so, and with good reason. There’s still far too much stigma and judgement and most of us mask it so well you can’t really tell we’re struggling unless you spend a lot of time with us.

In December it will be my fifth transplant anniversary. I have a lot of emotions around this, especially because of the pandemic and because of some other health issues, but I am thankful for this bonus time.

That said, my kidneys are not in the greatest shape. They are holding their own for now, but just before the pandemic I was preparing to potentially set up a transplant evaluation on them, but due to circumstances beyond my control, I postponed it and it is off the table right now.

To be quite honest, I’m ok with this, because I went through so much with my lungs that thinking about another transplant and going through this process again is something I am not mentally ready for right now.

As long as I can maintain where I’m at, I’m ok with this for now. I keep myself open to change and changing my mind, but I also know after 40+ years with TSC and at least 15 years with LAM what is in my best interest for my health AND my quality of life.

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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It’s Been a Year…

Last night, I celebrated my one year transplant anniversary.  At that time in 2016, I was coming off the ventilator & breathing my first new breaths on my own.

I still remember those moments. Still remember crying when my surgeon showed me my first x-ray of my lungs.

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A Few Answers

A few months ago, my numbers were unexplainably down about 30 perecent.

After some steroid pushes & medication changes, things were still looking a bit funky & my numbers still hadn’t risen,  so I needed another bronchoscopy (scope of my lungs).

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Blink Health Pricing Sometimes Beats GoodRx

I had to start using an Accu-chek meter, since I lost the headphone jack when I upgraded my iphone (for free) recently.

My Dario meter, which I loved, couldn’t be guaranteed accurate with using the new Apple dongle/adapter.

They are working on a compatible replacement part but it still has to go through FDA approval so who knows how long that will take.

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NaNoWriMo 2017: Plotober is Here

For the past two years I’ve written a novel for National Novel Writing Month.  It was a welcome distraction & radical departure from my life.

It also disciplined me to write 50,000 words in 30 days, which seemed really daunting at first but was actually doable.

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