Update and Change

I’m in the process of yet another overhaul. While I’ll keep this blog up for posterity and try to update some of the less evergreen content at some point, I want to work on really developing a practical toolkit for the mental health issues that come up with chronic illness/transplant/and rare diseases. I want to make it practical and accessible to people. I’m not sure what form it will take or what it will contain, and what format it will be in – a book, ebook, running a blog, or all three but I’ll decide that as I go. The time has come for this because so many organizations are restricted in what they can say or what they can talk about as far as mental health aspects and daily life. So much support and even social workers or counselors advising on mental health issues on the day-to-day have all but disappeared. Even the research is so narrowly focused it sometimes forgets impact and quality of life aspects.

This leaves whole swaths of people unsupported. I realize with some of this there is a fine line between giving medical advice and supporting but going after my Masters has helped me discern this more.

Everyone has different needs but there are tools or things that can help that people can do for themselves and should not be gatekept for professionals and people in higher education environments or a therapist’s chair. Not everyone can afford therapy anymore.

Furthermore, with COVID still being at high levels, it’s still hard for people to meet in person for support. Some people have Zoom burnout or fatigue, and some have difficulty taking notes or distilling the jargon around a technique or tool even if a therapist or other professional provides it.

I tend to freeze in crises but the key is I know why and now have some tools to attempt to take the edge down so at some point even with a good deal of work, I can work my way out of it. I’ve tried a lot of different modalities and treatments for mental health and what resonates with me and what did not. What worked for a while, then stopped, and what was outright not a good fit for me. My issue like others is consistency, remembering, and practice.

Admittedly, some of the energy medicine techniques I employ now I scoffed at in the beginning and resisted for quite a while when others I knew were attempting to show me. When I put my ego aside and gave them an earnest effort some of them became powerful adjuncts (supports).

People need this. It’s a big glaring and gaping hole in the system. With healthcare being so fragmented and broken, we have to keep our wits and sanity with us somehow to survive the constant gaslighting we are subjected to by the medical community. No one addresses this head-on and it’s time we do.

Also, our caregivers and friends also need these tools because it is hard to watch someone you care about go through so much.

Self-advocacy is an uphill climb these days, but it’s not insurmountable. Much like me compiling all of these tools is a daunting and big task that will take time but will benefit me to retain my practices or provide suggestions to try in different situations to calm my nervous system. I want to sift through it all and provide ample tools for everyone, including myself.

I promise not to have phrases like “calm down” or “breathe” either. Most people find this to be not only trite but also offensive because these are the very difficulties they are confronting breathing issues (like hyperventilating for example), or a flood of anxiety flooding their entire body in stressful situations. Also when these things are said people are not tuning in or supporting to figure out what is at the root of the problem.

I find when I have a settled mind, it’s easier to deal with the challenges that come up. If my anxiety is controlled I can be free to be myself. I still have my bad days of course, but at least now I don’t feel copeless. Having even a few tools is so much better than trying to fumble through by yourself.


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.

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.


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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