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Update on my Journey with my Kidneys

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Update on my Journey with my Kidneys
Moss Bliss
July 21, 2017

In 2001, after 12 years of taking large amounts of lithium carbonate at the request of my doctors for a perceived diagnosis of bipolar disorder (often 2100 mg/day or more), my kidneys gave out. I saw a nephrologist in Asheville, who demanded I stop the lithium immediately. My psychiatrists started a new Medication Guinea Pig Dance, but that is a different story, which I have written about elsewhere (culminating in termination of all meds in Nov. 2003).

My Creatinine levels were 3.4-3.8 at this time. The nephrologist said that they would not get better, but that they wanted to monitor them to keep them from getting worse.

Over the next couple years, I took issue with the idea that my kidneys could not improve. I asked about supplements, herbs, etc. During this time I was getting gout in my finger and toe joints. Eventually, an Asheville herbalist named Corey Pine suggested he had heard something about stinging nettle seed extract being of help.

After research, I ordered some from David Winston’s company. It was expensive as herbs go but cheap as medicines go, around $80 for 8 ounces (which currently lasts me 3 months). Over the next three years, my gout went away, my kidney-related back pain decreased (but did not go away), and my Creatinine levels got lower, eventually bottoming out around 1.9-2.1. This continued for several years.

In 2015, the Creatinine levels began to climb again. As of my last few blood tests this level was 2.4. My trips to the bathroom at night have increased from 0 to 3 or 4. In April I started doing more research, and in May I ordered some Astragalus (herb, not extract) on the basis of that research. The bottle said to take 3 capsules twice daily. Being cautious, I have been taking 2 capsules twice daily.

As of July 20, my nightly trips to the bathroom are in the 1-2 range, my kidney-related back pain is greatly reduced, and I’m feeling that the improvement is related to the Astragalus.

I have a new nephrologist (finally one who listens and even laughs) as of about 9 months ago. He is willing to look at the evidence as soon as I have new to present. My next blood test is scheduled for January, followed by another visit to the new doctor. I will check in with you. But my body tells me this stuff is amazing, and I’m going to increase to the recommended usage as of today.

I am fully aware that everyone is unique. My kidney damage was caused by high levels of lithium use; the herbs I have used may or may not be of use to you. But I thought you might like to hear a success story.

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21

Jul

2017

Falling off the cliff

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Things have been very odd around here. Issues with my cousin, my housing, my music, my job, pretty much everything. The waters are smoothing.

I still don’t know what’s going on with my cousin, it seems once a week she calls and leaves a screaming message on my phone that she will be leaving town “tomorrow”. So far as I know, it hasn’t happened yet. I hate that I had to pull away from her totally to preserve my own sanity, and I have also been incredibly ill from tree pollen and a resulting infection.

The illness caused me to badly underperform on my job, and I got written up for the first time in 3 years (on a major issue). But my client is more sympathetic than ever and I appear to have the support of his family.

And it’s hard to sing when you can barely breathe without coughing up a lung. But sing I will. My monthly housefilk was postponed a week — seems the major players forgot to get it on their schedule, and a week later worked better for all of us. So that will be this Saturday. Yay!

I won’t say anything about the housing issue at this time. There is a chance I may need to move, and a chance I may not. Lots of details need to be worked out first on either side. The upshot is an improvement (I think) in my financial situation, and enough in savings that I may not need to ask for help from family in the near future. Of course, the best laid mice and men seem to get other plans… or something like that…

My next performance is scheduled for ConCarolinas in June. I hope I’m in reasonably good shape by then. With the help of my friend Emmie I have found some strings which might make Arthur of the Wood sound better. I have also parted ways with Blue and Disciple (got paid for Disciple and will miss him) and have finally listed some of my extra electronic doodads for sale on eBay.

I hope everyone’s life is calm and that you are getting what you need from the Universe.

Hugs,
Me

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19

Apr

2016

New Year

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Like many people, I have not been at my best for the past several weeks. The weather has been strange, with only one very light snowfall yet, and often reaches temperatures in the 70s. Either this is the Winter of Global Warming or we’re being set up.

This weekend, I will be celebrating with many friends at GAFilk. Lots of music, lots of love.

People wonder what this blog is about. I’m a psychiatric survivor, musician, direct support professional, disabled person, pagan priest, bard, friend, online groups manager, science fiction and fantasy fan, reader of much non-fiction, editor… and I love my two cats.

I get criticism that I don’t just pick one subject and blog on it, but that would mean I would need many blogs. This blog reflects my humanity, in all my failures and successes, joys and degradations. I have been trying to make myself the best person I can be, and have had a lot of success in doing so, but it is far from a finished product.

If you are someone I have helped, thank you for being there so that I could practice being the good person I intent to be. If you are someone I have refused to help, thank you for helping me set boundaries on what I can and cannot do.

Hugs,
Me

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05

Jan

2016

Breaking the Silence

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Some of you already know this. I have been in transition with housing, moving to Sojourn, a cabin and a livelihood in Dandridge, TN, where I will steward the new growth of Triad Bardic College. This left my temporary housemate, Skycladlilith SaintMartha, in a tight spot, as she needs a place to go or a new housemate, but she knew it was coming eventually and I gave her lots of notice (and donated some of my things to her so that she might have a bit more money – by selling them – to take care of stuff).

I am mostly at Sojourn now. We held a dedication of the site a week ago, to much joy and revelry. We moved most of my furniture (except one bookcase and the stuff being left behind) yesterday. I still have a lot of unpacking to do, and I still have a lot of stuff in Blaine to move (mostly books, and then cleaning up the place).

This could, and by design should, be my last move. I have a smallish cabin, with about 7 acres of woods with walking trails. I will be hosting Triad events here every month or four, and doing teaching from here. The site is also a beautiful place for people to get married, and we have lots of clergy from a variety of spiritual traditions available for the purpose.

As for my own music, I promise to finally get my CD published (as a physical object — the music is for sale in downloadable MP3s now). I have purchased a new guitar, which is beautiful and sounds wonderful and has a pickup so I can play more venues. I expect to be playing at many events in 2016, starting with my annual trip to Atlanta in early January.

I got a new job a few months ago; this move more than halves my driving distance. It also puts me within 4 miles of my closest friends, who are now also my landlords. I have a friend in White Pine I’ve been wanting to spend time with, and that is now only 11 miles away.

As for my personal romantic life, it’s still me and Nan, and Nan is still in Hendersonville NC and unable to leave there at the present time or foreseeable future. It has been this way for a long time. I can live with it, and also wonder how I could shoehorn her into this cabin.

So that’s about it. My health has been all right, although when I cast myself far afield for Gatherings I have not been well. A lot of that is stress, a lot of that is “sun poisoning” (I *must* remember to take a hat), and perhaps some of it is as yet undiscovered.

Special hugs to my Family, and my family. My favorite cousins know who they are and know that I love them. I tend to love everyone who lets me, which has gotten me in a lot of trouble over the years but has helped me grow into what I am today, and I expect that growth to continue.

Blessings on you all.

Hugs,
Me

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29

Jun

2015

Bad Morning Ruminations

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Not my best morning. Fading in and out of a not-very-empowering dream, I started remembering various times in my life where my family hurt me and (a) failed to protect me, (b) ignored what was happening and then denied anything did, or (c) openly laughed at me for being hurt. All those times when just ONE person could have comforted me and it would be all right — and nobody did. All the times I was told that something I was good at would never be good enough to be worth anything (“You’ll never make money at that, better do something else.”)

I’m sure I’ve disappointed my family. but they disappointed me first.

And guess what? I’m not going to hurt myself. Too many people would say, “See, I told you he wouldn’t turn out to any good.” I hope you understand how horrible it feels to go on living and taking the best care of myself I know how, because, in my deepest heart, I know how many people would be satisfied if I gave up.

A lot of other areas of my life are based on that premise. I’m going to keep doing something, not because I love doing it (I know I would have loved it if I had gotten the least encouragement from the family who was supposed to do that) but because someone would be smugly satisfied if I quit and I refuse to give them that.

I’ll have sunnier posts. I promise.

Selected comment and response on Facebook:

Danielle Meierhenry Remember it’s Mercury Retrograde AND a full moon right now. It’s bound to play games in the subconscious. I know it’s little comfort in the moment, though.

Moss Bliss Yeah, well, Mom (Luna, Mother Earth) always makes me feel loved. I sometimes miss having a person touch me and tell me that, but I never doubt Goddess.

Moss Bliss That judging Sky God always took my family’s side, and told me I wasn’t His type. I’m sure a lot of people who are “different” feel the same on that score.

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04

Feb

2015

Not Doing So Well

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I’ve been melting down, or nearly so, for the past couple weeks. Everything is going well, but it’s not. I’m not letting myself be affected by stress, but I am. Apparently I am doing a good job of isolating stress from what I’m doing, and a poor job of dumping the stress or destressing so it’s building up.

The past couple days at work I have been nearly useless. The guys have not been doing well at all. There is still a lot of turmoil, getting staff in to cover slots instead of getting back to some kind of normal, and that always distresses the guys. But it’s getting to me, instead of my usual way of letting it flow over me.

The stresses have been: Death of car, dealing with my mother to get me home and then replace car, performance itself (although mitigated by how well I did), all the stuff going on at work (manager’s death, loss of staff, reaction of guys), the extra hours I worked to make up my missed time, information on my disability (which might end in 2 years, the way I read the law — and they don’t say explicitly anywhere what happens at the end of what they are now calling the “3-year extended trial work period”). And then the death of Robin Williams. That especially hit me because of all the potential suicides I’ve stopped, and the knowledge that he had stopped a few himself.

So how do I destress? I have people I can tell the problems to, but it doesn’t go away. I have nobody I can hold. Meditation has never worked for me, although I give it another try every few weeks/months/years.

OK, there is your 5 minutes of angst. Nothing to see here. Move along.

Hugs,
Me

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14

Aug

2014

What are you doing?

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I keep posting things on my Facebook page to help people. Not all the help being offered is appreciated by all my friends, but is usually objected to by someone it was not meant for. So Facebook is becoming less and less of a tool, and more of a slash and burn defense mechanism.  I am not ready to quit FB just yet. I did announce today that I’m not going to repost any stories on gun violence, don’t know what good that will do either way but it’s messing up my chi, so to speak.

So I was just wondering. What are you doing? How are you helping things move forward in the world?

I’ve done some things I’m beyond “not proud of”, but have done my best to put them behind me and move forward. Not everyone wants me to do that, as though my living in my past will make them a better person. I don’t buy that for a second.

But if we’re talking past, I have a pretty good one, and the closer you look to the present, the better it looks (outside of poor choices in relationships, but even then my purpose or intention was to help).

2005 – Co-founded Asheville Homeless Network, still the nation’s only standalone Membership Organization for the homeless. Not for people working WITH the homeless, not for raising funds to trickle down TO the homeless, but the homeless population itself. I managed to get full 501(c)(3) status for it, in almost record time according to lawyers I’ve spoken with, and did all the paperwork and followup myself. Still active under other leadership, but I ran it myself for 5 years.

2006 – started back to knitting, first scarves and then hats. A lot of my yarn has been donated, people hear what I’m doing with the hats (donating them to poor and homeless people, probably over 95% of them) and remember that bag of yarn they have that they’ve never used. I buy a lot of yarn. Just ask JoAnn Fabrics’ website. At this point, I’ve given away over 1,000 hats to grateful people and organizations, and I’m still going.

Somewhere around there I became a co-founder of Asheville Radical Mental Health Collective, a support organization that does not judge you based on your treatment choices but supports your right to make those choices. This includes (a hard one) illegal drug usage, or no “medications” at all, but also includes choices to follow your doctors’ advice.

2012 – Worked for 6 months at a Social Security payee firm, helping handle finances for people with drug, alcohol, or mental health issues who could not handle their own. I also completely rewrote the company website. At minimum wage.

2013 – Was hired as a Direct Services Professional, working 5 hours a day in a home for two disabled individuals. Some of the work is easy, some of it is not. A lot of it is just getting through, when behavior of my guy has to be tolerated and my job becomes one of not harming himself, me, my co-worker, or the other guy in the house. I still have this job.

And I’m still knitting. And I’m still trying to lead a dialogue online about making the country better by moving forward.

Which includes my membership in Justice Party USA. This is the only party with an ethical platform — social, environmental, and economic justice, freedom based on respect of all individuals and the world we live in. It may not work. People are afraid of third-party activism, afraid it will take votes away from the “good” oligarchs and so get the “bad” oligarchs elected. But I believe in voting my conscience, and I wish I could give everyone in America a wake-up call to where they would vote theirs.  Vote YOUR best interests, not those of the 84 people (or whatever the pathetically small number is) who own America and the media outlets. Reject negative politics in all forms from all sides.

 

My friends have mentioned that my blog does not take any stands, or settle on any issue. There are too many issues to pick one. But the first and foremost is, take care of myself. Make myself the best person I can be. Expose lies, reveal under-exposed reality, urge people to become the best person THEY can become. I know lots of them are better than me, or further along or better-equipped, but that’s no reason for me to give up on myself. I find people in need of help and try my best to help them see how they can better themselves, not by giving them a blueprint or putting myself forward as an example but by showing them it can be done, and it’s hard work. It’s hard work doing it, it’s hard work helping others respect themselves and others, it’s hard work writing blogs so few will even read, but it has to be done. For me. If it helps you, I would be happy to claim a mitzvah when it is offered, but this isn’t about Look At Me, it’s about Look At Yourself (and if you don’t like what you see, fix it).

I expect people who have been listening to my music have seen this trend. OK, I also have a wicked sense of humor, and it’s not exactly what people expect. Mis-wired brains and missing puzzle pieces, ya know.

 

Guess that’s enough rant for now.

 

Hugs,

Me

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16

Jun

2014

X Rays

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I had some x-rays taken a couple weeks ago for my chest, and the results included showing my “bamboo spine”. (They also showed I have some granulomas in my lungs, but she said not to worry about it.) Well, I had told them I had a diagnosis of ankylosing spondylitis (aka Bamboo Spine or Marie-Strumpel’s Disorder). But they ignored that, and, on the basis of this one x-ray, said I had DISH (Diffuse Idiopathic Skeletal Hyperostosis, or Forestier’s Disease).

So what’s the difference?

Forestier’s Disease usually gets diagnosed in one’s 60s and rarely earlier. Marie-Strumpel’s Disorder usually gets diagnosed by the time one is in one’s 30s. There may be a genetic aspect to Marie-Strumpel’s. The writeups in Wikipedia and WebMD say they are entirely different, and then talk about their similarities.

The first known onset of this disorder was when I was about 33, but it was not diagnosed until my chiropractor in Asheville took x-rays (my previous chiropractors never took x-rays, which is interesting as most chiropractors do that first thing).

What about treatment?

There isn’t any, other than chiropractic or massage therapy. NSAIDs (naproxen, ibuprofen) are shown to slow the spread and deal with the pain.

Here’s the good part. Due to my medically-compromised kidneys, I’m not supposed to take NSAIDS.

Well, heck.

Hugs,
Me

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09

Mar

2014