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.

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.

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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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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When Other Medical Teams Fail Their Transplant Patients

I haven’t posted a personal update in a minute.   Part of it is because I’m extremely worn & frustrated & I don’t want that to bleed out and be perceived as whiny.  I know it couldn’t be farther from the truth & it’s not, but still this is what my head tells me sometimes.

Even though I constantly tell other friends with transplants who feel similarly that they are doing anything but.

While rather lengthy this update encapsulates a few months of frustrating experiences which I felt important to share with others.

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Review/Beta Testing: MySpiroo

I signed on to be a beta tester for this device a few weeks ago, maybe it’s a month or more now.  (Things have been kind of a whirlwind).  I was excited when I received the package with the Myspiroo because it’s a smart phone spirometer, which I have been hoping for even before I was transplanted.

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