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.

8 thoughts on “Long Overdue Update

  1. So good to hear from you! You certainly have a lot to juggle now but you are smart enough to know how best to handle it for you.

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  2. Nikki, forget long overdue. It was perfect timing for a wonderful surprise update. So good to hear from you again! Cheers, Dennis

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  3. I’m so happy to see your post! Whatever decisions you make, I support you. I wish you love and light and wisdom. 💜

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  4. Sending you lots of love. So many big things, as always.

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