Quick MDA clinic update - Oct 2016

My chronic pain was acknowledged, my proximal muscles are continuing to atrophy, and there is nothing they can do to help since pain medications and exercise make me worse instead of better. Orders are to continue seeing my other doctors, take all of my medication, be mindful with my diet, avoid triggers when possible, rest rest rest, and return for documentation in one year.

Renal clinic is November 14th.

More blogging soon.

Internal Medicine and Social Drama

Today, I had my last Internal Medicine clinic until January. It was thankfully undramatic. This has been a long year of tests and symptoms and medication changes, but I'm feeling somewhat optimistic.

My gastric study looked ok, which is good news since the only emptying drug on the market, Reglan, triggers serious paralytic episodes. Feel free to dig through my HKPP blog for that drama. The ending diagnosis is Gastroparesis. I also have GERD, but that has been known for decades.

As for my potassium level, raising my dosage to a whopping 200 mEq max a day helped a great deal. My level rose an entire point to 4.7, which was our exact goal. Yay! Ideally, it would be best for me to be in the low 5s, but I'll take what I can get. Dr. B was super glad about that.

My phosphorus lab had to be sent off. I'll post the result here when I receive it. Dr. B said if it's normal, that puts me in a good place despite my apparent chronic kidney disease. The CKD will be monitored, but there's really nothing they can do for me. It's chronic, not acute, therefore there is no cure. It's something I've known for years.

I declined the social worker for a few reasons. I received many calls, which I missed, and eventually called them back. The lady said that I had accepted services on such-and-such date and that she was trying to set up an appointment to come to my house. I told her that not only did I not accept services yet, I had never even spoken to her before and didn't know who she was. She said it was in her computer that we had talked on that day and I said yes. I told her again that wasn't true. We went back and forth on this error, and she eventually said "sorry" and gave me my case manager's phone number. What case? Exactly.

Anyway, she explained that the case manager's job is to come to my place to talk about their services, ask questions (from a checklist that I hate...I'll address that another day), and check on me regularly. I told her that I would save the lady's number and call her if or when I was ready to discuss. I hung up and called my insurance to make sure they didn't receive a bill for services that I didn't accept or receive. They hadn't, thankfully, but I'm glad I checked. The fact that she said we spoke on that day and that I signed up when I definitely had not done so yet was concerning. I actually still have the missed call and voicemail saved in my phone as proof.

As I said, I told her I would call when I was ready to discuss their services. Within two days, I began receiving calls from the case manager asking if it was ok to come over to my place to ask some questions. I let it go to voicemail every time, and she gave up by the 3rd or 4th call. I concluded once again that people don't listen to me, and they don't respect my boundaries. Story of my life.

I'm not ok with someone knocking on my door unannounced on a weekly basis to ask me generic questions that don't apply to someone with a terminal illness, and that's what was going to happen. I had a social worker in 2014, and that's what she did. I eventually stopped answering the door. I would have done the same this time. I am fine with going somewhere and talking to someone - social worker, therapist, doctor - but I am not ok with them coming here, and especially popping in to check on me uninvited. As an introvert with anxiety, that derails me, and I have no problem admitting that. I spent the first 36 years of my life being denied boundaries. I'm not about to give them up now.

If I extend a specific invitation to you, or if I tell you that you are welcome here, then you definitely are. I don't want any of my friends or family to think otherwise or feel too intimidated to spend time with me. I wouldn't have set up gaming and art tables in my living room if it was a problem. For your consideration: I get very little sleep, and when I do sleep, it's at odd times. Nothing makes me want to melt down more than finally falling asleep, and being awakened by a knock on the door, a ringing phone, or a loud neighbor. One of my biggest issues every day is that I'm so exhausted, I can't seem to process things in a timely manner (brain fog). I draw a blank when dealing with someone. I really don't feel cut out for living, and I need a lot more sleep. I unravel quickly because I'm too tired and I want the world to stop waking me up, judging me, giving me a hard time about petty things like grammar (for the love of god, find something better to do), comparing my problems to theirs or others' (this is not a competition), making assumptions, or trying to fix me, and just be a friend. I'm the first one to say I'm not a pro at managing this turbulent way of life, but I'm trying. I appreciate those who have been patient and kind, and I thank you sincerely for understanding, or at least attempting to.

Living, Learning, Growing

"If you want to kill yourself, kill what you don’t like. I had an old self that I killed. You can kill yourself too, but that doesn’t mean you got to stop living."


— Archie’s Final Project - Dir. David Lee Miller


Great words, and exactly what I’ve been trying to do. As much as I wish it was something that would happen overnight, I've discovered that redefining one's self is a process of revelation, learning, living, grieving, and growing.

It has not been easy, but it has been worth it.

I’ve outgrown my former self in many ways. I still have a long way to go, and I hope I never stop trying to be a better version of me, for the sake of sanity and humanity.

I keep reminding myself that it’s ok to outgrow others, too. I find myself clinging to them, because they’re what I know. But they’re hardly what’s best for me.

I have to do what’s best for me. Even if that means losing the people of my past. Even if that means losing everyone, and starting over.

Family Mystery Solved!

I have been trying to find my biological maternal grandparents' genealogy for the longest time, but I could not find my grandfather's records to save my life. It has been so strange to conduct worldwide searches on every ancestry site known to man, Google, and the National Archives, and find no trace of my grandfather's childhood. The only thing I had been able to locate was his name on the 1940 census. He was a 26 year old divorced lodger in Mississippi. But there were absolutely no records of him before that, so I couldn't find his parents or siblings or anything at all.

I had free access yesterday on Ancestry, so I decided to comb every census in Mississippi between 1910 and 1940 with the surname. I knew he was born in 1913 and had siblings. I searched his name, possible sibling names, possible parent names, possible misspellings of the last name, and after a few hours, I finally ran across something that caught my eye: a boy named May.

He was 6 years old on the 1920 census. He had 4 siblings (two more were born later), and they lived in central Mississippi.

The parents' names were Henry and Laura. I searched for them on Ancestry to find the name Mahlon listed under sons. Nope, that's not right, and I knew it wasn't. A quick Google search confirmed that "Mahlon" didn't exist. Somebody got it wrong.

I went back to censuses, and searched for Henry and Laura in 1930. Jackpot. I found some of the children listed, including a 16 year old son whose name had been butchered by the census taker. I remembered on the 1920 census a different name starting with "OT" had been started, scratched out, and replaced by "May". On the 1930 census, it said "Mabel". And over that name, an obvious correction to the name "Mablum".

My grandfather's name was Otto Mablum, and they called him May.

To add insult to injury, he grew up knitting pantyhose for pay.

He hated his parents. That I knew. I also knew that he made hosiery, changed his name to "Mace" in adulthood and moved out of their house young. He married, had kids, and was divorced by his mid 20s. He met and married my grandmother 5 or 6 years later.

There isn't a thing wrong with his name or the fact that he was a knitter of women's underwear, but it's important to put this into historical context. We're talking about a young Southern Baptist man in early 1900s with brothers named Harvey, Henry, Al, Joe, and James. He was May the Knitter. I was told he was mean and rough...a fighter. Well gosh, he probably had to be.

My grandfather had a rocky life, and he made his wife and children's lives equally rocky. Not only did he have psychological issues from childhood that manifested in abusive ways, he had hyper-religious OCD and was hospitalized for paranoia. Sadly, he is also suspected to have had undiagnosed Periodic Paralysis (not related to mental illness...HKPP does not affect the brain), as did his mother. Both were written off as crazy, and they never received any medical help for their episodes. In spite of that, they both lived into their 60s.

This is a sad story, but I'm glad I finally found my grandfather, great grandparents, and even my great great grandparents after searching for so long. I have their burial information, thanks to Find A Grave, and I'll hopefully be up to making a road trip to the cemetery someday.

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.