Aug 11 Test Results

I picked up my test results from the clinic today.

Phosphorus is still too low, potassium needs significant improvement, and kidney function has slipped again. In better news, after heavy supplementation (over 150,000 IU a week), my Vitamin D is finally in low-normal range for the first time in my adult life.

I will continue all scripts, my K+ dosage has been increased again and is now 200mEq a day, and I will have to keep searching for any possible way to bring phosphorus back into normal range.

I have a CT and Barium swallow test at the crack of dawn Wednesday.

Internal Medicine August 2016

I spent the afternoon at internal medicine clinic. They administered emergency potassium because it was 3.7 and I could barely lift my body. (Feel free to visit previous blog entries if that number makes you skeptical, as I've already explained why the 3s are a very bad place for me.)

I had the usual panels of blood work (Stat K+, BMP, Mag, Phos, Vit D), and based on results vs medication doses, we agreed again that my body isn't absorbing my diet or supplements well at all. No solution known.

New GI and CT scans are being scheduled, assuming insurance approves, to monitor my choking and swallowing issues and double-check my head since the migraines and auras are so severe.

I met the on-staff social worker for the first time, who is getting me back in the door with social services, as well as arranging free transportation to future doc appointments that are scheduled in my county. That'll be interesting.

The social worker and Dr. B both assured me not to worry about my impending SS Disability review. I don't know why it has worried me so much, but it has, and I'm relieved to know they have my back. My disability is dead obvious, but my anxiety loves to play worst case scenarios over and over in my head. I'm sure social services will probably offer therapy, and I'll accept. I think everybody should seek counseling at some point in their life, even if only to confirm that it's unnecessary. I dare say nearly everyone could benefit from it. At any rate, I am not considered a severe case, according to the social worker, but I certainly have enough on my plate to qualify for services. We'll see what happens.

I'll post my test results when I know them, and I'm scheduled to go back in two weeks for follow-up tests.

To the self-righteous hypocrites and haters of the ice bucket challenge

Click to get to the article.

May you all take a break from your charmed lives to swallow this planet-sized serving of crow.

Have a nice day.

I have nothing to add.

Credit to The New Yorker

Banana Advice

Thanks to Geoff Lehman for the meme.

Please cease and desist this terrible advice to HKPP patients. :) I would personally have to eat 26 bananas a day, and not only would my body not absorb or magically utilize the potassium properly, I would die from the carb load. We don't care that bananas have a little bit of potassium in them. You don't understand Primary Periodic Paralysis.

Stop the madness. Thank you. :)

8 pounds, 2 ounces, 20 inches, and Infinitely Loved

In the midst of so much pain, heartbreak, chaos, and death

there is the miracle of joy, hope, comfort, and life.

Thank you, Asher Grey, for arriving a little earlier than expected.

You are a precious light in our very dark world.

Grandmother's Independence Day

I've always called July 3rd my grandmother's independence day. I can't believe she's been gone nine years now. She was one of the best people I've ever known.

My grandmother loved everybody, even all of the people who did her wrong. She took too much crap, but it was her nature. I'm almost sure she loved me more than anybody ever has in this world. She (and my other grandmother) defended me when nobody else did, and I'll never forget that.

I was her part-time caregiver for 3 1/2 years, and her slow, cruel death from Alzheimer's is still the worst thing I've ever seen. She was such a fighter and didn't want to leave us...she suffered for a decade. We were heartbroken, but relieved that she was finally free. I will always miss her terribly.

When I arrive at death's door someday, I hope she's on the other side waiting for me with buttermilk biscuits, butter beans, and sweet tea on the red and white checkered dinner table.

Not Alone, But Life Can Still Hurt

I read a private blog today that simultaneously made me feel better and broke my heart. Chronic illness, either physical or mental, is great at that. To know you're not alone in the struggle can give you the strength to face it and keep going, but it's also sad to know someone else, especially someone you love, is living in the same realm of suffering as you.

Life is weird and unpredictable and sometimes very hard, and we can only live it one day at a time. We could all stand to remember that it's all any of us can do, and therefore we must make a conscious effort to act (and react) accordingly.

Orlando Love

Sunrise at Rosen Shingle Creek

October 2013

There are really no appropriate words

when something this terrible happens.

All I know is my sadness is profound,

my love for Orlando is bigger than life,

and I cling to hope that, somehow,

we will never see this happen again.

On This Episode: HKPP, Myotonia, Depression, Love, and Living Alone

Yes, the title is a play on words. I'm recovering from another episode of Periodic Paralysis, complete with myotonia in one leg and the rest of me mildly paralyzed. The pain when myotonia strikes is a 10 on the pain scale every time, resulting in yelling and nausea/vomiting and nearly passing out. Then I can't put my leg on the ground for hours or sometimes days because it's so drawn up. Occasionally, I am unable to keep food or drink in me for a day or three...that's where I am at the moment. Somewhat mobile again, but not functioning.

My body completely revolts when the bad episodes happen, and life is just terrible all-around. I face this alone, and my feelings fluctuate between being thankful nobody is here to have to deal with this and anger and despair over the world's complete lack of understanding. I realize there isn't a thing anybody can do for me, but a thread of "give a damn" would be kind. At the very least, I would feel like it matters whether I'm dead or alive. I'm not feeling it. I haven't for 30 years.

I read a lot of articles about love. It's an interesting subject to me, but I don't expect I will ever put the things I've read or learned into action with the exception of friendships, which are more important than I can express and I guard them with my life. I manage to be a dreamer and a realist at the same time. I lie in bed and imagine a different me, but the reality is that this is the me I'm stuck with and I'm glad that there is no man (or child) feeling trapped, anxious, and/or resentful. I refuse to coexist that way...I cannot do it. I am an empath and I would feel more sorry for my significant other than for myself, to the point of detriment. I know me. I love people just like anybody else. Dare I say, I am more passionate than some people, without a doubt. My love is intense.

And because of that love, I would never drag an innocent soul into my personal hell.

If you knew my story...

I'm sure I stepped on some toes with the last post, but it needed to be said.

If you knew my story - everything I've seen and heard and done and been put through as a result of religious fundamentalism - my anger and disgust would make a lot of sense. For over 30 years, I was a doormat to a wide variety of obsessive-compulsive control freaks. I've held in my feelings to the point of implosion.

That point arrived when my mother died, and has been continuously fueled by the constant stream of religious abuse I see in the news and all around me.

I am still theistic, and this is not about God. It's about selfish people using God's name to serve their desires and justify their sicknesses.

If I live long enough to write a memoir someday, I'll tell my story.

And you will either be self-righteously offended, or you will understand.

Either way, I won't regret it.

Life Is A Journey

Life is a journey, indeed. For me, it's more like a roller coaster. People have told me that I have the worst luck of anyone they've ever met, and that drama follows me. Like it or not, they are correct. So I've decided that I'm going to ask Santa for a drama-free life for Christmas. I'm going to go to the mall and sit in his lap and everything.

Ok not really. Although maybe I should.

I love the inspirational photo above and felt that it was an appropriate beginning to this new blog. Over the years I've learned that life is fragile, and that when its all said and done, what will matter the most is this: Did I find my purpose, and did I make a difference?

This certainly isn't my first blog...no sir...I'm what is called a serial blogger, and I've been sharing the ups and downs of my roller coaster life online for many years now. Feel free to find my other blogs via google or other search engine. I'm quite easy to find, as I use the same username everywhere. Doing that is a great way to keep a person honest. This blog may bore you, intrigue you, inspire you, or annoy you. Who knows? Whatever the case, I am who I am and I'm ready to launch yet another blog. Look out, world.

Welcome to my roller coaster life, and thank you for following me on this journey.